McKee: RI DD Services Need $510.6 Million

By Gina Macris

RI Governor’s FY 25 Budget Proposal-

In a budget plan largely driven by the federal court, Rhode Island Governor Dan McKee has proposed $510.6 million in overall developmental disabilities spending for the fiscal year beginning July 1, about $41.5 million more than the General Assembly enacted for the current fiscal year.

Roughly 55 percent, about $283.4 million, of the proposed developmental disabilities budget would be reimbursed by the the federal-state Medicaid program.

At the same time, McKee seeks to close a projected deficit of $28.3 million in the current budget of $469.1 million as the state tries to integrate adults with developmental disabilities into their communities to comply with a 2014 consent decree with the Department of Justice (DOJ).

Much of the shortfall reflects upward cost adjustments made by the Caseload Estimating Conference (CEC), a budget-planning panel which meets twice a year, advising the governor in November and the General Assembly in May.

McKee also would add $2.9 million to the current budget, and $1.1 million in the next one, for “conflict-free case management,” not only to adhere to Medicaid regulations but to comply with the consent decree. Almost all that funding would come from the federal government.

State social workers from the Division of Disabilities will be assigned to check in monthly with those receiving services and their families to determine if their needs are being met, according to a BHDDH spokesman.

It is not clear whether – or how - this arrangement meets the expectations of an independent court monitor overseeing the consent decree changes. The monitor, A. Anthony Antosh, hasn’t issued a report since last August. Antosh has called for “independent facilitators” to help each individual develop a purposeful program of services and to keep track of how the plan works out.

Developmental disabilities programs account for more than $7 out of every $10 spent at the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), which would get a total of $706.3 million in McKee’s proposal. McKee’s proposed budget for all state spending in the new fiscal year is nearly $13.7 billion.

The latest proposal represents nearly a third more funding for developmental disabilities than the $339.3 million the General Assembly approved just three years ago, in the spring of 2021.

Much of the investment, in recent years, has been used to hike wages for caregivers and their supervisors, for education and training, and for the development of innovative approaches to supporting adults with developmental disabilities.

In three steps since July, 2021, the state has raised the pay for direct care workers by about 49 percent, from $13.18 an hour to a minimum of $20 an hour, in keeping with orders from Chief Judge John J. McConnell of the U.S. District Court, who has been monitoring the state’s efforts to meet the requirements of the consent decree since 2016.

McConnell found that, apart from the impact of the Covid-19 pandemic, historically depressed wages had led to an exodus of workers that prevented the state from offering employment and other services in the community as promised in a 2014 consent decree.

Beginning last July, the $20 minimum hourly rate for workers has been wrapped into a new reimbursement system for private agencies intended to accurately evaluate the needs of individuals, allow them bigger spending limits to get employment and other supports, and to implement administrative changes promoting integration in the community.

The ultimate impact of higher funding on the lives of adults with developmental disabilities remains to be seen. A decade after the state adopted an “Employment First” policy as part of the consent decree, the governor’s figures say that 24.8 percent of the population protected by the consent decree is working in the community, far short of the target 73 percent.

In November, BHDDH told the CEC that private service providers still don’t have the number of workers they need to offer employment-related services and community-based supports for all who want them. A BHDDH report called the shortage “critical.”

 Still, the state’s eye-opening investment in historically underfunded services during the last few years has begun to show results. While a big staff shortage remains, private agencies are beginning to see improvement in their ability to attract new workers.

The recent pay hikes, along with support from a statewide workforce initiative, helped private providers add 274 direct support staff between January and September of 2023, BHDDH officials reported in November.

McKee’s proposal for Fiscal Year 2025, which begins this July, includes nearly $462.4 million in reimbursements to the three dozen private agencies, or subcontractors, who serve as the backbone of the service system the state relies on to carry out the requirements of the 2014 consent decree.

These reimbursements also cover the cost of one-person programs managed by so-called “self-directed” individuals or families. The number of self-directed programs has grown to more than a quarter of the caseload of about 4,000 persons, in part because of the staff shortage at private agencies. Individuals and families, however, report the same kinds of problems finding qualified caregivers as the agencies, especially when it comes to securing employment-related services.

A separate line in the budget would allocate $15.6 million for other costs related to private services, according to a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

These expenses include the salaries of state social workers and administrators assigned to clients of the private providers, as well as human resources support, building maintenance, information technology support, and contracts for electronic records and for education and training provided by the Sherlock Center at Rhode Island College, the spokesman said.

The state also maintains its own network of group homes, which McKee would fund with $32.6 million in the next fiscal year.

All together, these budget categories add up to nearly $510.6 million.

No additional wage increases are planned for the fiscal year beginning July 1, except for those who provide in-home services to adults with developmental disabilities and were included in a comprehensive Medicaid rate review conducted by the Office of the Health Insurance Commissioner (OHIC). For the in-home workers, the governor’s budget seeks about $844,000. The final OHIC report, issued last September, said that the developmental disabilities workforce will be part of the next rate review in two years.

RI's New DD Services Begin Roll-Out

Anne LeClerc Explains New Assessment Process in Virtual Meeting Via Advocates In Action RI

By Gina Macris

After years of looking the other way, the Rhode Island General Assembly has funded comprehensive reform of the state’s developmental disabilities services.

What the new system will look like to the people that it will serve – individuals with disabilities, their families and agencies that provide services – has yet to be fully fleshed out. State officials are putting the final pieces together and explaining the changes to the developmental disabilities community.

But the overall outline of reform is clear, and the state has hired additional staff to communicate the changes and help with implementation.

As of July 1, state officials have been given the money to do the job: a $78.1 million reform package proposed by Gov. Dan McKee and approved by the General Assembly last month.

Services for adults living with intellectual and developmental challenges are funded through the federal-state Medicaid program, with the federal government supporting slightly more than half the cost.

In all, the Division of Developmental Disabilities (DDD) will receive $469.1 million during the current fiscal year, nearly $92.8 million more than the final allocation for the budget cycle that ended June 30. The DDD spending ceiling makes up nearly 70 percent of a total budget of $672.8 million for the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH.)

The new budget marks a watershed moment in the life of a federal court consent decree, signed in 2014 by then-Governor Lincoln Chafee and representatives of the federal Department Of Justice, which had filed suit to enforce the Integration Mandate of the Americans With Disabilities Act (ADA.)

A Capsule History

The agreement committed the state to improve the quality of life of adults who had been warehoused in sheltered workshops or day care centers., in violation of the ADA’s Integration Mandate. Except in rare cases, such settlements cannot be appealed.

But it has taken another nine years of dogged federal enforcement, as well as emerging advocacy at the State House, for state government to come up with the necessary funding and reorganize the bureaucracy to turn the system around.

For years, the state’s powerbrokers paid lip service to the consent decree, setting up pilot programs that were never expanded and adding pennies to the poverty wages of workers in private agencies that did the day-to-day work of implementation. Staff attrition grew to be the number one problem in providing services.

Then in 2021, Chief Judge John J. McConnell, Jr. of the U.S. District Court, started ratcheting up the pressure, issuing one order after another that dealt with caregiver wages and other issues.

Under threat of a contempt finding and hefty fines, the state produced a comprehensive action plan for consent decree compliance, which McConnell approved in October, 2021.

The Role of Advocacy

A former court monitor in the case, Charles Moseley, once said that judicial action can go only so far. Enduring change depends on the advocacy of the people.

While consent decree case dragged on before Judge McConnell, the developmental disabilities community shifted strategy at the State House, joining forces with dozens of other organizations to send the message that the chronically underfunded developmental disabilities system was just a microcosm of all Medicaid health and human service programs in the state.

For State Sen. Louis DiPalma, who became chairman of the Senate Finance Committee earlier this year, all the coalition’s voices shine the light on broad inequities in healthcare and human services.

A law enacted in 2022 with the leadership of DiPalma in the Senate and Deputy Majority Leader Julie Casimiro in the House has tasked the state’s health insurance commissioner with revising Medicaid reimbursement rates every two years. The first set of recommendations is due out in the fall and will be waiting for the General Assembly when it convenes again in January.

Beginning in 2016, when DiPalma pushed back against an impractical plan to pay for the consent decree by cutting group home costs, he has gained prominence as an advocate for adults with developmental disabilities.

From his earliest days as a legislator, he said, he has sought equity for everyday Rhode Islanders based on “facts and data.” DiPalma has served in the Senate since 2009.

The Power of the Court

Key facets of the latest funding for developmental disabilities can be traced back to specific court orders that McConnell has issued in the last two and a half years –as well as recommendations from an independent court monitor, A. Anthony Antosh, appointed by McConnell.

• An entry-level wage for direct care workers of $20 an hour, with an average rate of $22.14 an hour for more experienced caregivers. This pay bump, from a minimum of $18 an hour, costs $30.8 million, including $13.9 million in state funding, and the rest in federal Medicaid dollars. A court order issued Jan. 6, 2021 said the $20 rate must go into effect by Jan. 1, 2024.

• An additional $44.2 million from Medicaid, including $20 million from the state, to increase flexibility in providing community-based services available to adults with developmental disabilities. Until the monitor spoke up in a court session earlier this year, the state had planned to continue providing 40 percent of daytime services in day centers. The increased funding authorizes additional staffing for community-based activities anytime of the day seven days a week.

• $3.1 million, including $935,465 in state revenue, to reflect a last-minute projected cost increase for the developmental disabilities caseload calculated during the May Caseload Estimating Conference. (An earlier article citing $75 million in reforms did not take into account the results of the Caseload Estimating Conference.)

The Bureaucracy Matters

In the Caseload Estimating Conference, fiscal representatives of the House and Senate leadership and the governor convene with human services officials in public twice a year to do the math around the state’s public assistance obligations. There is a similar Revenue Estimating Conference.

The impetus for including developmental disabilities in caseload estimating came from one of Judge McConnell’s court orders.

Until developmental disabilities services were included in the Caseload Estimating Conference in November, 2021, budgeting for this segment of the population lacked transparency. Families and advocates approached each new session of the General Assembly with dread because of the uncertainty about sufficient funding.

Under the old system of service delivery, individual funding for adults with intellectual and developmental challenges – about 4,000 people - was made to fit into one of 20 boxes, and anyone who needed anything more had to file an arduous appeal.

Most of the appeals were granted, after service providers and families showed the individual really needed a particular service. But the added funding often lasted only for 12 months, and the appeal process began once again.

In the meantime, BHDDH officials were berated by lawmakers for constantly running budget deficits. At one point, BHDDH projected a $26 million deficit for the fiscal year ending June 30, 2018 because of extra individual funding granted on apppeal.

Changes Take Shape

During a recent interview, DiPalma, the Senate finance committee chairman, outlined additional features of the new state budget that will benefit all people with all kinds of disabilities:

• Increased access to the Rhode Island Public Transit Authority’s (RIPTA’s) paratransit program through $500,00 in vouchers for people who live outside the geographical catchment area for this service. DiPalma said a lack of transportation often keeps people from getting a job or engaging in community activities.

• Adoption of the Ticket-to-Work program, which removes limits on earnings of people receiving federal disability payments. This change is expected to boost enthusiasm among those who might fear losing benefits if they get a job.

In the new system, individuals will get the funding and services they need “up front,” said Anne LeClerc, Associate Director of Program Performance at DDD during a virtual public forum last month.

The state will supplement its standard assessment with a questionnaire to draw out any needs that might have been overlooked, instead of allocating a cookie-cutter funding level and waiting for an appeal.

The new approach will “make it better for everybody,” LeClerc said. “And every year, we’ll be doing an ongoing review to make sure that the funding is appropriate,” she said.

Appeals will still be an option, but officials believe the new approach will cut the numbers down significantly, she said.

In another big change, individuals will no longer have to give up any services to get employment-related supports. Instead, the reforms will make job supports available to all who want them.

State officials have insisted they will fully comply with the consent decree by the deadline next June 30, but even the rapid changes being made today probably will not be fast enough to meet the deadline.

LeClerc and others admitted it will take a year to phase in all the pieces of the new model with everyone eligible for services.

For example, LeClerc said the questionnaire intended to draw out any supplementary needs not captured in the basic assessment hasn’t been finalized yet. And the latest version of the assessment itself, revised by American Association on Intellectual and Developmental Disabilities during 2022, has not yet been put into use in Rhode Island.

While the interviewers have been trained in the new model, DDD officials indicated the revised assessment would not roll out until August at the earliest.

LeClerc said the state will need to collect the data from 500 assessments before it can devise a new funding formula.

The DOJ has said it requires at least a year’s smooth implementation of court-approved changes before it signs off on a consent decree.

A DOJ lawyer, Amy Romero, warned the state last December that it needed to bring a sense of urgency to its efforts to meet the deadline for full compliance, even as she praised officials’ stepped-up efforts in 2022.

Antosh, the independent court monitor in the case, is expected to file his assessment of the state’s latest efforts before the end of July.

DDD Expands Staff

To help with implementation of the consent decree, DDD has filled a year-long vacancy in the administrative position dedicated to employment-related support and made several other appointments. The budget sets aside $203,275 for eight new permanent positions dedicated to the consent decree.

Elvys Ruiz, who has more than 20 years’ experience in state service, was hired in May as Administrator for Business and Community Engagement. A native of the Dominican Republic, he is a former interim administrator of the Minority Business Enterprise Compliance Office at the Department of Administration and also has experience at the Department of Human Services and the Department of Transportation. Ruiz succeeds Tracey Cunningham, who left more than a year ago.

Six new DDD staffers also were introduced at the virtual public forum in June, including at least one who will be working directly with individuals and families who direct their own program of services, a segment that makes up one quarter of the caseload.

• Amethys Nieves was hired in May as Associate Administrator of Community Services to work on improving information and communication. She has degrees in psychology and social work and has experience and has experience in providing direct services and in development of healthcare programming.

• Johanna Mercado and Jackie Camilloni also have been hired as part of a communications team as coordinators of Community Planning and Development, with Camilloni focusing on individuals and families who direct their own services, a group that now makes up about 25 percent of the developmental disabilities caseload. Mercado is an academic librarian with degrees in political science and library science. Camilloni has 25 years’ experience at a privately-run organization serving adults and children with intellectual and developmental disabilities (I/DD). She also has worked as a state social worker at both the Department of Children, Youth and Families and DDD.

• Steven Seay is the new Coordinator of Integrated Community Services. He has worked in the human services for thirty years, with experience in developmental disabilities, nursing home social services, and adult protective services. Most recently, he worked in DDD’s Office of Quality Improvement.

• Kelly Peterson, a former DDD social worker and supervisor, has been hired as the new Chief of Training, Staff Development and Continuous Quality Improvement to oversee changes in professional practice required by the consent decree. She also has worked as a DCYF social worker.

• Peter Joly, who has worked in the mental health field for more than 20 years, has been hired as a Principal Community Development and Training Specialist. He also has experience providing services for adults with developmental disabilities.

• Cynthia Fusco, chief assistant to DDD director Kevin Savage, has been promoted to a new position as Interdepartmental Project Manager.

Next Steps

Judge McConnell has scheduled a public status hearing Tuesday, Aug. 1 at 10 a.m. The hearing will be accessible remotely. (He will meet with lawyers in chambers in late September, but that session is closed to the public.) To watch the August 1 hearing, go to the Court’s calendar page, enter the date of the hearing and select Judge McConnell’s name from the drop-down menu of judges. Click on “Go” to get to a link to instructions for public access to the hearing.

DDD, meanwhile, is holding in-person and virtual public meetings where officials have said they will add greater detail to the overview of the new system they outlined June 20.

A video recording of the June 20 public forum is on the Facebook page of Advocates In Action RI

Three informational sessions remain in July:

• Wednesday, July 19, 2023 5:00 PM to 6:30 PM, Rochambeau Library Community Room 708 Hope St, Providence

• Tuesday, July 25, 2023 1:00 PM to 2:30 PM, Warwick Public Library Large Meeting Room 600 Sandy Lane, Warwick

• Virtual public meeting Thursday, July 27, 2023 3:00 PM to 4:30 PM. Click here to register via Zoom.

Low RI Medicaid Rates Strain All Healthcare Services, Witnesses Say

By Gina Macris

Annette Bourbonniere

Without a personal care assistant, Annette Bourbonniere of Newport needs up to five hours each day to get herself dressed in the morning.

For the past year, she hasn’t been able to find regular help for a position that pays $15 an hour, the Rhode Island-approved Medicaid rate for the services she needs, unchanged for the last 18 years.

Not only is it impossible for her to engage in productive activity, Bourbonniere says, but “I worry every day how I am going to survive.”

Bourbonniere, seated in a high-backed power chair, was one of hundreds of people from all walks of life who converged on the Senate Finance Committee April 28 to hammer home the message that the state’s Medicaid program is broken.

The witnesses testified for a cluster of bills which, taken together, would stabilize Medicaid-funded services with one-time rate increases and set up a rate review process every two years, with a 24-member committee drawn from the community advising the Executive Office of Health and Human Services (EOHHS). There is no estimate of the overall cost of the bills.

In a letter to the Senate Finance Committee, the Director of Administration, James E. Thorsen, and the acting Secretary of Health and Human Services, Ana P. Novais, indicated that the prospects for immediate changes appear gloomy.

Thorsen and Novais said there are 74,000 separate Medicaid rates in the state’s program, all of which cannot be revised in one year as the legislation requires. A rate review “of this magnitude” would take at least five years, they said.

They said the bill establishing a 24-member advisory committee for Medicaid rate review instead might be seen as “establishing policy and rate setting”, rather than advising EOHHS, the agency with the legal authority to set rates.

There is also an appearance of a conflict of interest in that the potential make-up of the committee includes members who would be recommending rates for other members of the same group, Thorsen said.

Support for Medicaid reform remains uncertain in the House, where Rep. Julie Casimiro, D-North Kingstown, has organized companion legislation adding up to a Medicaid overhaul..

At the outset of the hearing, State Sen. Ryan Pearson, D-Cumberland, the chairman of the Senate Finance Committee, said the Senate has already made Medicaid reform one of its top priorities in the current session.

Louis DiPalma

The legislation was spearheaded by Sen. Louis DiPalma, D-Middletown, first vice president of the Senate Finance Committee, who received repeated praise from the speakers for his relentless focus on equity issues in the human services.

Dozens of witnesses told the committee that the reimbursement rates to community-based health and social service programs fall so far below costs that:

• Access is shrinking to out-patient services that can prevent costly hospitalizations and even life-threatening situations.

• Caregivers ranging from doctors and dentists to nursing assistants and personal assistants to those with disabilities are either leaving their fields or leaving the state.

• Hospitals are left to deal with more patients who have nowhere else to go, while they lean on private insurers for more money to fill the gap. In the end, those who buy private insurance must foot the bill for escalating premiums.

According to the testimony:

• Four hundred infants with special needs are waiting for early intervention services to which they are legally entitled.

• Nearly six hundred elderly are waiting for home care services that will prevent them from going into nursing homes.

• Almost 200 children and youth are waiting for psychiatric care, sometimes in hospital emergency rooms.

Sherrica Randle

At the hearing, Sherrica Randle said her 13-year-old daughter has been hospitalized three times in the last six months for behavioral issues. During the most recent episode, her daughter spent nearly two weeks in the emergency room of Newport Hospital for lack of a pediatric psychiatric bed at Bradley Hospital, Randle said.

Elsewhere, a teenage girl who had made a “serious” suicide attempt nevertheless had to wait four months for mental health services, according to Alexandra Hunt, clinical director of Tides Family Services.

The COVID-19 pandemic exacerbated the labor shortage in front-line human services but many agencies have struggled for years to pay enough money to prevent workers from leaving the field, the witnesses said. Jamie Lehane, President and CEO of Newport Mental Health, said he had to sell a building a few years ago to continue making payroll and avoid a shut-down.

Like other community social service and home care agencies, providers of services for adults with developmental disabilities can’t get qualified personnel to work for Medicaid-approved rates, starting at $15 an hour.

These providers compete with retail and fast food chains, which pay more for jobs that are less demanding, said Casey Gartland, representing the Community Provider Network of Rhode Island, a trade association.

Unlike other sectors of the Medicaid program, services for adults with developmental disabilities are subject federal oversight because of a 2014 civil rights consent decree and several court orders, one of which requires the state to raise wages to $20 an hour by 2024.

The proposed budget of Governor Dan McKee would raise the wages of front line developmental disability workers to $18 an hour as an intermediate step on July 1.

But the most recent data about the workforce and inflation has prompted DiPalma to sponsor legislation that would raise the pay of developmental disability workers to $21 an hour on July 1. Rep. Evan Shanley, D-Warwick, has filed a companion bill in the House.

The Rhode Island Federation of Teachers and Health Professionals held a press conference in favor of that proposal just before the start of the hearing on Medicaid reform.

Doctors, dentists, and hospital executives testified in person and in writing that the state’s Medicaid program has a ripple effect on the healthcare of all Rhode Islanders.

The case of Women and Infants Hospital, where 80 percent of Rhode Island mothers give birth, illustrates that point.

Shannon Sullivan

Shannon Sullivan, President and CEO of Women and Infants, said it is the ninth largest stand-alone maternity hospital in the United States.

Nearly forty-five percent of its revenue comes from Medicaid Managed Care, which pays half of the Massachusetts managed care rate for obstetrical births, she said.

Simple math shows that the situation is unsustainable, she said. “This is not an issue that will go away, and it is not an issue that we have much time on,” Sullivan said.

Without Women and Infants, women experiencing difficulties in their pregnancies would have to go to Boston or New Haven to receive the same level of care, she said.

Gail Robbins, senior vice president of Care New England, the parent company of Women and Infants, said that because of low Medicaid rates, hospitals must put pressure on private insurers, whose rates are 200 to 300 percent more than Medicaid.

“It’s not a healthy bottom line,” Robbins said.

DiPalma said hospitals are not awash in cash. They absorb considerable costs in uncompensated care of uninsured patients, and must pay hefty licensing fees to the state, he said.

The Department of Administration and EOHHS support the programs funded by Medicaid and recognize the need for regular rate reviews, Thorsen and Novais said.

But “any changes to the rate setting process should be carefully measured and balanced to avoid significant negative funding impacts of other important programs such as education, public safety, and natural resources,” they said in their letter.he said.In their letter,

The state already spends 40 percent of its general revenue on human servicesm the two administrators said. By comparison, Massachusetts pays considerably more on the human services, up to 56 percent of its budget, according to DiPalma.

Others at the hearing saw the situation as a question of values.

Bourbonniere, a consultant on accessibility and inclusion, said she was dismayed when she attended an online meeting with EOHHS officials last fall and they said at the outset, with apparent pride, that Rhode Island has a lower Medicaid expenditure per person enrolled than the median in the United States.

For her and others going without services, “this was crushing,” she said in a letter to the committee.

Paying personal care assistants and other essential workers a living wage contributes to the state’s economy in the goods, services, and taxes they pay and the businesses they support, Bourbonniere said.

These essential workers also enable people with disabilities to earn a living. “Isn’t that better than the current investment in maintaining poverty,” she said.

The bills heard April 28 are:

• S2200- provides a rate-setting review every two years for all medical and human service programs licensed by the state or having a contract with the state, including those funded by the federal-state Medicaid program.

• S2306 - provides one-time increases to base rates in the Medicaid program for home care services

• s2648 - funds pass-through wage increases to those who work in long-term care in the community with $17.7 million in the established “Perry-Sullivan” law, rather than allowing the governor to use one-time funding from the American Rescue Plan in the next budget. Proponents say the state could be penalized by the federal government from using ARPA to replace or “supplant” existing funds.

• S2311 - provides for a 24-member advisory committee to EEOHS for the rate-setting process

• S2546 - provides for one-time Medicaid rate increases to early intervention and outreach programs for young children with special needs.

• S2588 - provides one-time increases to Medicaid rates for dental services and includes chiropractic care for the first time in the Medicad program.

• S2598 - increases the daily reimbursement rate to nursing homes by 20 percent for single-occupancy rooms with private bathrooms.

• S2884 - Provides a substantial increase to the Medicaid managed care rate for hospital births

• S2597 - eliminates the need for annual eligibility review for the eligible for the federal Katie Beckett program for children with disabilities, as long as a doctor says their condition is unlikely to change. the bill also allows families of eligible children to request additional service hours.

  All photos from Capitol TV

New Relief Funding Welcome, But Forum Says Caregivers Still Undervalued

By Gina Macris

In the last week, both Rhode Island and Massachusetts have taken steps to slow the exodus of workers from the community-based human service agencies the states depend on for critical mental health and social services.

The problem is that, through the federal-state Medicaid program, states set rates for human services workers in the private sector far below the salaries they pay state employees to do comparable work. The pay for private-sector human services jobs also lags behind he starting wages at major employers such as Amazon and Costco.

The two states are taking a variety of actions to raise pay and make the jobs more competitive, but a panel of human service executives from Connecticut, Massachusetts and Rhode Island says one-time infusions of cash do not address the core issue.

Massachusetts Governor Charles Baker is poised to sign a bill that passed both houses of the Massachusetts legislature last week giving $30 million in coronavirus relief funding to human service agencies to stabilize the workforce and provide college loan relief to workers.

In Rhode Island, the governor and the leadership of the House and Senate agreed Dec. 6 to use nearly $50 million in relief funds to re-open early intervention programs to new referrals and shore up staffing for agencies caring for children removed from their homes, child-care providers, and pediatric primary care medical practices.

The General Assembly also promised to tap $57.4 million in enhanced Medicaid reimbursements to support workers in home and community-based services, as long as the federal government approves that use for the money.

“It’s a step in the right direction,” said Tina Spears, executive director of the Community Provider Network of Rhode Island (CPNRI), of the announcement by Governor Dan McKee, House Speaker Joseph Shekarchi, and Senate President Dominick Ruggerio.

As she spoke, she was helping to lead a tri-state virtual public forum on the plight of nonprofit human service organizations – and how to stabilize them.

The forum described a regional slice of a national problem which threatens the quality of life essential to a thriving economy, the speakers agreed.

Community-based human service organizations, which provide a wide array of services, are the “connective tissue of the economy,” said Rhode Island Rep. Liana Cassar, speaking to more than 200 people in Connecticut, Massachusetts and Rhode Island who were listening or watching the two-hour presentation.

In the long run, one-time fixes, like coronavirus relief funds, will not address a system that has been long undervalued, Cassar said.

The pandemic did not create the problem, all agreed. Instead, it served as an accelerator.

Massachusetts State Senator Cindy Friedman said legislators were “blown away” by the statistics provided by non-profit human service agencies during State House testimony.

Massachusetts benchmarks the wages of employees in community-based human service organizations to a median of $16.79 an hour, said Michael Weekes, CEO of the Providers’ Council, a trade association of more than 220 community agencies that serve all types of people in need.

That median wage lags behind even starting wages at several large employers. Costco starts at $17 an hour and Amazon hires at a minimum of $18 an hour in Massachusetts, Weekes said.

“We just can’t compete,” he said. State employees in the human services make an average of $1,274 a week, but those in the private sector doing similar work get an average of $548 a week – a gap of more than 100 percent, Weekes said.

And whatever Connecticut and Massachusetts are paying for health and human services, Rhode Island is below that, said State Sen. Louis DiPalma. Rhode Islanders seeking better pay live within minutes of the Massachusetts and Connecticut borders, he said.

“We are treading water and taking on water,” said Spears, the director of CPNRI. The low salaries in human services have impacted the quality of life for a disproportionate number of minorities and women. They are essential workers, just like firefighters, police, and teachers, and should be treated that way, she said.

The consequences of the workforce shortage have become dire:

In Rhode Island, all nine early intervention programs for infants and toddlers with developmental delays were closed to new applicants programs at the end of November – a situation that is expected to soon be reversed soon with Governor Dan McKee’s release of $3.6 million in coronavirus relief funds from the CARES Act. That was part of the relief package announced Monday, Dec. 6.

In Connecticut, State Rep. Catherine Abercrombie said she had been hearing that a lack of mental health workers is an underlying issue in the three-day closure of one high school that had received threats of violence. Hamden High School, closed last Friday and again Monday and Tuesday. It reopened Wednesday with heighten security, and school officials planned to beef up mental health services, according to local news reports.

Diane Gould, CEO of Advocates, a large human services provider west of Boston, connected school violence and suicide risks to children’s mental health concerns.

The number of children who have attempted suicide increased “significantly” over the summer, she said. In August, her organization saw four children aged 11 to 17 who had tried to kill themselves.

“As many as 50 percent of the kids we’re seeing have aggression, suicidal thoughts, and anxiety,” she said, and there has been a 46 percent increase in calls to Advocates’ information and referral line since the pandemic struck in 2020, she said.

“There has been a terrible convergence of inadequate staffing with a dramatic increase in need,” she said.

Gould and other providers said they have been forced to create waiting lists for critically needed services or have stopped taking new cases.

In Rhode Island, service cuts for adults with developmental disabilities violate a 2014 civil rights consent decree that was supposed to bring them 40 hours a week of supported employment and individualized activities of their choice in their communities.

To keep staff from quitting, some providers described raises, signing bonuses, and other incentives they have given in the last few months – even though they are overspending their budgets.

“It’s a little nervous-making,” said Chris White, CEO of Road to Responsibility, provider of services to adults with developmental disabilities on the South Shore of Boston. “We’re doing this with one-time funds,” he said. “If there are Massachusetts legislators on this call, I hope you are hearing that. We are eating into our reserves.”

Abercrombie, the Connecticut legislator, said “this is a crisis.” The state still has $300 million in coronavirus relief funds to allocate, “and I’m glad we do,” she said.

The non-profit human service sector is a “vital business,” said Cassar of Rhode Island. “Our families depend on it and our economies depend on it,” she said.

“When people say, ’We need to bring well-paying jobs to Rhode Island,” they should be told, ‘We have jobs in Rhode Island. We need to make them well-paying,’” she said.

State senators DiPalma in Rhode Island and Friedman in Massachusetts have sponsored bills to permanently raise the pay of caregivers in the non-profit sector. Friedman’s bill would link salaries to the amount Massachusetts pays state employees for similar work, with a phase-in period of five years.

DiPalma has introduced a bill for several years that would fix minimum pay at at 55 percent above the state’s minimum wage, although he says he considers it a “work in progress.” DiPalma plans to re-introduce a revised measure in January.

Rhode Island will have a court-ordered review of the rates paid to private providers of developmental disability services, many of whom are members of Spears’ organization, CPNRI. A federal judge has ruled that without such a rate review, Rhode Island’s developmental disability system cannot fund the changes necessary to comply with the 2014 consent decree.

But that review will not affect other segments of the non-profit human services.

DiPalma said, “When we, the legislators, value the profession of the front-line workers, we will address the issue. Anything else will be a band-aid.”

DiPalma, the first vice president of Rhode Island’s Senate Finance Committee, acknowledged that solving the crisis is “categorically in the hands of the legislature.”

He said that every day, citizens should be asking their legislators what they are doing for the public. he said.

Meanwhile, Monday’s announcement by McKee, Shekarchi and Ruggerio signals the release of significant coronavirus relief funding in the short term:

• $38.5 million for children, families and social supports; $32 million to small business; $29 million to housing; and $13 million to tourism and hospitality industries; all from a total of $113 million in what McKee calls his “Rhode Island Rebounds” plan, funded by the American Rescue Plan Act (ARPA).

• $57.4 million from the enhanced federal Medicaid match, which community-based agencies may use to shore up their workforce through hiring bonuses, raising pay and benefits, shift differentials, and other incentives

The three leaders also announced funding to supplement the human services portion of McKee’s “Rhode Island Rebounds” plan:

• $ 6 million for childcare providers, on top of the $13 million in the original plan. Ruggerio, the Senate president, said, “Childcare is a top priority. We can’t get people back to work if they can’t get childcare.”

• $3.64 million from unspent CARES Act funding for early intervention, in addition to the $5.5 million McKee originally put in Rhode Island Rebounds.

The House Finance Committee is expected to vote next week on the funding. The unusual display of unity among the executive and legislative leadership of state government Monday signals swift passage of the funding measures. (McKee does not need legislative approval to release CARES Act funding.)

Rhode Island is the only New England State that has not spent any ARPA funds, and critics have put increasing pressure on the General Assembly in recent weeks to take action on McKee’s proposal, especially after the start of a waiting list for early intervention services last week.

View the entire public forum on YouTube: https://www.youtube.com/watch?v=PLS18en74A8

RI EOHHS Secretary To Temporarily Run BHDDH

Womazetta Jones

By Gina Macris

Rhode Island’s chief health and human services executive, Womazetta Jones, will serve as interim director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and conduct a “thorough review” of the agency, Governor Daniel McKee announced April 9.

BHDDH has been beset by controversy over the discharge of some long-time patients of Eleanor Slater Hospital who, advocates say, have been left without the support they need in the community.

BHDDH officials have denied the reduction in patients is a cost-cutting measure. The state may have to compensate for tens of millions of dollars of federal Medicaid funding for Eleanor Slater Hospital which it had counted on to balance the BHDDH budget until mid-2019.

Jones will continue her work as Executive Secretary of Health and Human Services while serving at BHDDH, according to McKee spokesman Matt Sheaff. That means she is expected to be hands-on at BHDDH while also overseeing three other agencies: the Departments of Health, Human Services, and Children, Youth and Families.

McKee said in a statement he wants Jones to make recommendations to him “on issues including, but not limited to, departmental policy, operations, staffing and quality standards for patient care.”

Jones is stepping in for A. Kathryn Power, whose resignation McKee announced April 5.

Proposed $10M Cut In RI DD Spending Overshadows Reform Plans

By Gina Macris

Thursday’s initial briefing on Governor Daniel McKee’s proposed budget for adults with developmental disabilities highlighted a $15-million set-aside to plan changes in the system, in response to a federal court order enforcing a 2014 civil rights consent decree.

At the same time, the budget legislation submitted to the General Assembly later in the day, on March 11, shows that overall spending on developmental disabilities would be $10 million less than spent this year.

McKee proposes adding $476,573 to the current developmental disabilities allocation for a total of nearly $304.5 million in federal and state Medicaid money and miscellaneous other sources of funding to close out the current fiscal year June 30.

The budget bill for the next fiscal year cuts overall spending on developmental disabilities to $294.4 million. That total includes $5 million in federal funds and $10 million in state revenue earmarked in the budget for the $15-million “transformation and transition fund” to plan reforms to comply with the consent decree.

The spending cut reflects projected savings from phasing out the costly state-run group home system. Residents would be moved to less costly group homes run by private service providers, according to the budget plan.

But the private agencies, who were in a precarious financial position even before the onset of the COVID pandemic a year ago, have been reluctant to take on additional clients in recent years because the amount the state pays does not cover the actual cost of services, according to repeated testimony before House and Senate finance committees, as well as testimony in federal court.

The state’s own consultants, the non-profit New England States Consortium Systems Organization, highlighted the providers’ fiscal problems and the way the demands on them strained capacity as part of an exhaustive 18-month study completed last summer for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The core long-term problem, exacerbated by COVID-19, is an inability to find workers for jobs that carry a high degree of responsibility but provide an average starting wage of about $13.18 an hour, less than some fast food and retail chains and less than Amazon, according to testimony before Chief Judge John J. McConnell of the U.S. District Court.

McConnell, who enforces compliance with a 2014 civil rights decree requiring the integration of adults with developmental disabilities in their communities, has ordered the state to raise workers’ wages to $20 an hour by 2024 as part of a comprehensive three-year overhaul of the developmental disabilities system.

The state budget indirectly controls how much the private providers can pay their workers by setting reimbursement rates for various services, but no money in McKee’s proposal is carved out for a rate increase.

Nor does it appear the McKee administration anticipates the heightened level of spending in the next several years that would support the kind of investment needed to comply with requirements of the consent decree to accommodate clients’ desire to be part of their communities, at work and at play. The consent decree gets its authority from the Integration Mandate of the Americans With Disabilities Act.

McKee’s budget summary anticipates costs for developmental disabilities services will increase 4 percent annually through 2026.

A 4 percent annual increase would come nowhere close to fulfilling the court-ordered hourly wage of $20 an hour which, according to one estimate, would require an budget hike exceeding 45 percent.

The budget summary indicates the state aims to save a net $11.4 million by transferring the operations of the state-run group home system to the privately-run system by October 1.

The state-run system, called Rhode Island Community Living and Supports, (RICLAS) is currently allocated $29.7 million to care for 116 group home residents. The budget summary says transferring RICLAS operations to the private group home system would save $19.2 million in federal-state Medicaid funds in the RICLAS account in the fiscal year beginning July 1.

At the same time, a total of $7.8 million would be added to the private provider system to care for the former RICLAS residents. The budget for the next fiscal year would still leave about $9 million in RICLAS through June 20, 2022. A BHDDH spokesman could not immediately say how long the RICLAS phase-out would take.

The $19.2 million cut in RICLAS would eliminate the equivalent of 50 full-time jobs, mostly from attrition or transfer, the BHDDH spokesman said. RICLAS caregivers are paid a minimum of $18 and receive state employee benefits.

The last time BHDDH announced plans to move large numbers of people in residential care, in 2016, it achieved only a small fraction of the savings the Office of Management and Budget had calculated.

Of 100 persons projected to move from group homes to less costly shared living arrangements in private homes during the first six months of 2016, only 21 made successful matches with families.

Instead of projected savings of $19.3 million, the state recouped a few hundred thousand dollars in that six-month period.

Between March, 2016 and July, 2020, the number of people in shared living arrangements increased from 288 to 399. Since then, the number has decreased to 378, according to BHDDH figures.

The $15-million transformation and transition fund would support a policy and planning effort to carry out reforms required for compliance with the consent decree, according to the budget bill.

BHDDH informed Judge McConnell in February that the changes would take 18 to 24 months to implement, with a target date of December, 2022.

According to the budget language, the fund will be dedicated to:

• Help providers “strengthen” their operations to “support consumers’ needs for living meaningful lives of their choosing in the community”

• Allow providers the chance to participate in a performance-based payment model

• Reduce administrative burdens for providers

• Invest in “state infrastructure” to implement and manage these initiatives

• Prepare for a new way of approaching budgeting of the developmental disabilities caseload in the future.

Beyond the language in the budget bill, there were no details immediately available from BHDDH on what the transformation and transition fund will pay for.

RI General Assembly Will Handle Court-Related DD Issues DD Issues In Regular Budget Talks

By Gina Macris

The pace of discussions for complying with a court-ordered overhaul of Rhode Island’s developmental disability system is expected to pick up as early as next week, when newly elevated Governor Daniel McKee rolls out his budget proposal for the fiscal year beginning July 1.

McKee was sworn in March 2, replacing Gina Raimondo, who resigned as governor after clearing final hurdles in Washington, DC to become Secretary of Commerce. Raimondo’s office said in mid-January that McKee, then Lt. Governor, would be responsible for submitting the budget proposal to the General Assembly.

It remains unclear to what degree, if at all, the proposed state budget will incorporate additional money for initial steps toward compliance with a federal court order enforcing a 2014 civil rights agreement.

While uncertainty about funding hovers, court-ordered discussions organized by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) have been underway since last August to develop a path forward for providing services that will encourage integration of adults with developmental disabilities in their communities, in accordance with the 2014 consent decree and the Americans With Disabilities Act.

A recent report to Chief Judge John J. McConnell, Jr. of the U. S. District Court indicates short-term recommendations are taking shape to address some of the 16 points the judge laid out in a reform agenda last summer.

He gave the state until June 30 to develop a three-year implementation plan that will achieve full compliance with the consent decree by 2024.

Representatives of the House and Senate leadership participated in some court-ordered reform talks until McConnell issued an order Jan. 6 which said the three-year plan must include these specifics:

• a $20 minimum wage for direct care workers by fiscal 2024.

• Incorporation of the developmental disabilities caseload in the formal process for estimating the state’s public assistance obligations for budget calculations, beginning this year.

On March 3, House Speaker Joseph Shekarchi and Senate President Dominick Ruggerio issued a new statement on how they will handle legislative issues raised by the reform efforts:

“Specific issues will be analyzed and discussed in legislative committees as part of the public hearing process on pending legislation as well as the upcoming state budget.”

The two leaders continued: “The members of the General Assembly care deeply about individuals with developmental disabilities and ensuring a strong continuum of care, and the Senate President and House Speaker believe that we have an obligation as a society to provide strong services and supports for all vulnerable Rhode Islanders.”

The leadership had withdrawn from reform talks out of concern that their representatives’ participation could be perceived as tacit approval of change outside the legislative process, according to separate letters sent to McConnell Feb. 3.

Shekarchi’s and Ruggerio’s statement did not specifically mention the direct care worker wages or making the developmental disabilities numbers part of the twice-yearly Caseload Estimating Conference, the budgeting tool used by the governor and the legislature.

Development of a new approach for determining how to support the individualized plans of the developmentally disabled population is at the heart of the overhaul. The existing fee-for-service system was designed 10 years ago for congregate care, where one or two staff members could oversee as many as ten clients in a day care center or sheltered workshop. The U.S. Department of Justice found that model violated the ADA’s Integration Mandate.

In November, McConnell heard testimony that the current funding ceiling for the private provider system, roughly $268.7 million in federal/state Medicaid money, will not support integrated services, which are much more labor-intensive — and thus, more costly — than congregate care. The cost of correcting the non-compliance could increase the developmental disabilities budget by nearly 50 percent, according to one estimate.

Because of the uncertainty over funding, five workgroups organized by BHDDH are focusing on short-term changes that can ease administrative burdens on providers and make the state bureaucracy more user-friendly for the individuals served and their families, according to a progress report submitted to McConnell at the end of February.

According to the report, BHDDH expects to have detailed information by March 31 on:

• shifting from quarterly to annual per-person budget authorizations

• streamlining dozens of private provider billing codes, many of which require documentation of staff time in 15-minute increments for each client served

• simplifying the process of writing each client’s annual service plan “to reduce repeated questions, frustrations, and errors requiring correction and intervention.”

The report recommends adding a second assessment or new questions or criteria to improve the accuracy of the standardized Supports Intensity Scale-A, (SIS-A) interview, used to determine service needs and funding levels.

Improved assessments would reduce reliance on appeals. Interviewers also need training on cultural differences, it said.

Additional recommendations include:

• a training program for parents on how to approach the SIS-A, which has been the subject of frequent complaints over the years from parents

• clarification of the process for appealing funding determinations made as a result of the SIS-A, and developing ways to more quickly resolve appeals

• consolidation of separate applications for Medicaid and for Medicaid-funded services into one process

• a request for a waiver from the Centers for Medicare and Medicaid Services for Medicaid eligibility redeterminations for persons with developmental disabilities, who have life-long conditions.

The report said long-term revision of the fiscal and reimbursement system will be implemented by December, 2022.

The workgroups developing the recommendations include both state officials and representatives of the community, including individuals who themselves receive services, families, advocates, and service providers.

The groups’ recommendations are reviewed by the appropriate department-level directors and other key officials, according to the report.

Once final recommendations are analyzed and decisions made by the state, a “cohesive workplan” that will be submitted to McConnell on or before June 30 as required by an order the judge issued last July 30, the report said.

Pandemic Pushes Worry Over RI DD System Survival “Front And Center” - Judge McConnell

By Gina Macris

Judge McConnell

The federal judge overseeing the reform of Rhode Island’s developmental disability system says the COVID-19 pandemic has sharpened his concern about the financial ability of the state and its service providers to meet long-term goals of the consent decree, which mandates integration of the target population at work and at play.

Other participants in a May 18 hearing in U.S. District Court in Providence echoed the judge’s concerns, but they also said the pandemic has created a great opportunity to cement changes that might not otherwise have come as quickly.

“The fiscal health and stability of providers has always been in the back of my mind,” said Chief Judge John J. McConnell Jr., noting that his worry has come “front and center with this crisis.” Stability is “essential for the consent decree to play out and be seen as accomplished,” he said.

The state and federal governments in 2014 agreed to a civil rights consent decree mandating employment-related services to provide access to jobs in the community for people with developmental disabilities as well as supports to allow them to enjoy integrated non-work activities. The decree runs until 2024.

Kevin Savage

During the hearing, Kevin Savage, the state’s new Director of the Division of Developmental Disabilities, disclosed immediate financial concerns. He said that the state has not received approval from the Centers for Medicare and Medicaid Services for the second of three advance payments promised to keep private providers fiscally afloat during the height of the pandemic.

On March 26, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) announced that a total of $15.4 million in federal-state Medicaid funding had been set aside for these so-called “retainer payments” during April, May, and June.

While the April payment has received CMS approval, the one for May has not, Savage said. A BHDDH spokesman later said that $5.1 million in advance payments to providers were made May 15.

Savage said it was “important that the state make that payment” to the providers.

The BHDDH spokesman later elaborated:

“When the retainer payments were first described and provided in Rhode Island, CMS had not issued technical guidance on these types of payments.” Since then, he said, CMS has limited retainer payments to a 30-day period, but that “the state is actively working with CMS to expand this time frame.”

CMS reimburses a little more than half of any Medicaid cost applied to the Division of Developmental Disabilities, but if the federal government ultimately does not approve the May 15 payment to providers, the state will be responsible for the entire $5.1 million.

As to the June advance payment, Savage said during the court hearing that the money will be re-cast as an increase in Medicaid rates that adds up to the same amount originally promised to providers.

He also disclosed that one provider decided to change the type of services it offers and the executive director resigned over the issue. Going forward, Savage said, he understands that particular agency would be “less focused” on the kind of individualized work his division wants to do, but he reserved further comment until he has had a chance to speak in depth with agency officials.

The hearing was streamed via the internet application Zoom, as have been previous U.S. District Court proceedings since the federal court building on Kennedy Plaza was closed in early March at the start of the pandemic. For the first time on May 18, however, the hearing was arranged so that the public could see the participants as well as hear them.

Victoria Thomas, a lawyer for the U.S. Department of Justice, said the DOJ is “very focused” on how those protected by the consent decree will get community-integrated services going forward.

The capacity of providers to deliver those services involves more than funding, she said. The state needs to make administrative changes to ensure a stable system of integrated services and supports.

A. Anthony Antosh, the independent court monitor in the case, pressed for two immediate administrative changes:

● Annual funding authorizations for service recipients to replace the quarterly allocations now in place.

● The end of prescribed staffing ratios according to five funding “tiers,” which are based on perceived levels of disability and do not necessarily reflect the amount of support needed for a task at hand.

Savage said the staffing ratios are written into Medicaid rules, and BHDDH could work administratively with CMS to eliminate them. The ratios were designed for center-based day care and providers have argued that the ratios do not work in an individualized community setting. Families and other advocates also oppose them.

Savage said the quarterly funding authorizations were enacted by the General Assembly and cannot be changed without its approval. The fiscal arm of BHDDH favors quarterly payments, he said.

Melody Lawrence, Director of Policy and Delivery System Reform at the state Executive Office of Health and Human Services, said the argument for quarterly authorizations is to “ensure that the resources go to those who need them most.”

McConnell questioned how often people’s service needs change.

“You are doing more frequent checks to make sure people actually need those services,” Lawrence replied.

Two experts have testified before a special legislative commission that Rhode Island is the only state with quarterly funding of adult developmental disability services, a feature which providers have said repeatedly makes it difficult for them to plan ahead or prepare for the kinds of long-term changes the consent decree demands.

The commission, led by State Sen. Louis DiPalma, D-Middletown, recommended more than a year ago that the state switch to annual funding of individualized service plans. It is generally accepted among developmental disability professionals that barring unexpected events, like the death of a family member, the needs of individuals with intellectual and developmental challenges remain fairly stable and predictable throughout their lives.

Savage said that fiscal officials at BHDDH are committed to creating a funding model that is “easier and more straightforward” for providers and families to navigate.

Thomas, the DOJ lawyer, told Savage: “We’ve been hearing that quarterly authorizations create an administrative burden on providers. We like hearing that you want to reduce administrative burdens.”

McConnell asked Antosh to report to the Court by the end of June what the state has done to ease administrative burdens on providers.

Antosh indicated his report will also include a rundown on the changes the state must undertake to satisfy the consent decree by 2024.

Based on his comments in the hearing, he is likely to include recommendations for increased reimbursement rates to providers and provisions for universal access to internet technology for those receiving developmental disability services.

During the hearing, Antosh asked Savage in the short term to eliminate the scale of rates it pays for various daytime direct support work and instead pay the highest one – assigned to community-based activities - for all front-line staff work.

Savage reminded Antosh of the state’s budget deficit, which has been estimated at $234 million in the fiscal year ending June 30 and a whopping $800 million if the next budget cycle is included in the total. He said his division would start on a case-by-case basis by focusing on funding the needs of each individual authorized to receive supports.

Antosh said a lack of access to internet technology has emerged as a big failing during the pandemic. Group home residents need access to wireless networks, as well as to tablets and other hardware that could help them feel less isolated and in the long run could assist providers with remote wellness checks and the like.

A relative handful of people receiving BHDDH-funded supported employment services have been able to work from home, Antosh said, but more would like to try, according to survey results passed on to him.

Technology must be part of the long-term future for the developmental disabilities service system, he said.

The pandemic has curtailed most daytime services and providers’ ability to bill for them in the current fee-for-service reimbursement system. Most of the daytime activities that have occurred have involved outdoor exercise, Antosh said.

At the same time, providers have had to bear the burden of costly cleaning protocols and other unexpected expenses in group homes that are not automatically reimbursed by the state.

As of Tuesday, May 19, the coronavirus affected 47 congregate care sites, according to the BHDDH spokesman. A total of 115 people in congregate care have tested positive, including 5 who were reported hospitalized on Tuesday. An additional 98 people have been exposed to the virus because of where they live but were asymptomatic. And 7 more persons have died from COVID-19, the spokesman said.

Antosh, meanwhile, said the coronavirus crisis has highlighted the fragility of families as well as providers as they have scrambled to support loved ones with developmental disabilities.

Families often have had no support in caring for adult children or siblings who may need attention of one kind or another all their waking hours – and during the night as well.

Antosh said those who direct their own program of services have had difficulty finding staff to relieve them during the crisis. About 700 persons or families direct their own programs, and BHDDH relaxed its rules on hiring staff to allow any capable adult – including parents and legal guardians who might otherwise be out of work.

Savage said a long-standing prohibition against paying legal guardians to support adults who receive BHDDH funding will not be re-instated after the state of emergency is over.

Antosh said 80 percent of family members answering a questionnaire distributed by a coalition of community organizations reported a high level of anxiety.

Seventy percent said they were concerned about what might happen if their loved one needed to be hospitalized or if they themselves became ill and could not continue as caregivers.

(The state Department of Health recently advised hospitals to make exceptions to their no-visitation policy during the pandemic for those who needed assistance in communications and the support of a familiar caregiver to understand medical procedures.)

Outside BHDDH and the Rhode Island Department of Education, which is responsible for transition services for high school students with developmental disabilities, state officials have been “slow to realize how vulnerable this population is,” Antosh said.

But once they understood, officials in other state agencies have become very sensitive to the needs of those with intellectual and developmental disabilities.

He cited the hazard pay awarded to group home workers, a large order of personal protective equipment (PPE) delivered to providers two weeks ago, and another large order for family caregivers that arrived last week, and an increased focus on testing individuals and staff over the last several weeks.

Antosh said “all parties” have joined in discussions about “what re-opening looks like.”

File photos by Anne Peters

RI DD Direct Care Raises To Kick In Oct. 1

By Gina Macris

Direct care workers employed by private agencies serving persons with developmental disabilities in Rhode Island will have to wait until October to receive raises provided in the state budget that took effect last month.

But when the raises do show up in their paychecks, they’ll be for the full amount – 80 to 85 cents an hour, according to state officials.

A spokesman for Nicholas A. Mattiello, speaker of the House of Representatives, had suggested that raises proposed by Governor Gina Raimondo in her budget plan, and enacted by the legislature, might take effect July 1.

An additional pay boost added in the waning days of the General Assembly session would follow on Oct. 1, the speaker’s aide had said.

But state officials now say that both raises will take effect Oct. 1, allowing time for the state to work with the federal government to make technical changes required in the Medicaid program to incorporate the wage increases.

Direct care workers employed by developmental disability service organizations will receive an estimated 80 to 85-cent hourly pay raise effective Oct. 1, according to state officials.

The General Assembly set aside a total of $9.5 million in federal and state Medicaid funds - including $4.5 million from the state budget- for raises to direct care workers. That total consists of $6.2 million proposed by Governor Gina Raimondo in her original budget plan and an additional $3.3 million added by the House in the waning days of the 2019 session of the General Assembly.

At that time, Mattiello’s spokesman said that the pay increase proposed by the Governor would become effective July 1 and the amount added by the House would kick in Oct. 1.

But the final budget language does not specify an effective date.

In a recent public forum, Kerri Zanchi, director of the Division of Developmental Disabilities, said that because the pay raise involves federal Medicaid funds, the state must work with the Centers for Medicare and Medicaid Services to make changes to the federally-authorized reimbursement rate the state pays to privately-run service providers for front-line staff.

Unlike previous pay increases enacted by the legislature, the $9.5 million investment in direct care wages will not extend to supervisors, job coaches and other specialists working with adults with developmental disabilities, state officials have said.

Raising the pay of direct care workers is considered a critical issue in employers’ ability to recruit and retain staff at a time when the state relies on some three dozen privately-run agencies to implement the requirements of a 2014 federal civil rights consent decree. Drawing its authority from the 1999 Olmstead decision of the U.S. Supreme Court, the consent decree requires the state to change to an integrated, community-based model of daytime services by 2024, with an emphasis on employment.

According to a budget analysis by the House Fiscal Office, this year’s raises will boost the pay of direct care workers to about $13.00 an hour. But the state and private providers historically have differed on how far raises will go, because the state allows much less for employee benefits and other employment-related overhead than providers say those expenses actually cost.

A trade association of two thirds of private providers in the state says that on average, entry-level employee make about $11.44 an hour, while more experienced direct care workers make an average of about $12.50 an hour. The Connecticut legislature enacted a minimum wage of $14.75 for developmental disability and personal care workers in 2018. Massachusetts pays $15 an hour for personal care workers, a category which includes many who support adults with developmental disabilities.

Advocates: RI Must Put Higher Value On DD Workforce To Ensure Stability In Client Services

Image courtesy of RI Capitol TV

By Gina Macris

The incremental pay increase that Rhode Island Governor Gina Raimondo proposes for those who care for adults with developmental disabilities- about 34 to 41 cents an hour - is “much appreciated,” Tom Kane, CEO of AccessPoint RI, told the House Finance Committee recently.

But “it’s not enough,” Kane added quickly.

Entry-level workers making an average of $11.44 an hour, or more experienced colleagues paid an average of $12.50 an hour, are “often helping a person eat, shower, use the bathroom, or they could be helping someone learn how to drive their car,” Kane said.

“It is a completely and utterly important job, but based on the funding available, it is not really valued by our state,” Kane continued.

“ I’ve said this in this room a number of times. A budget is a statement of values, and what we’re saying is that this work isn’t worth enough money to make a living.”

To illustrate his point, Kane told Finance Committee members that he searched for jobs on the website Indeed.com to prepare for his testimony March 13 and found a posting from a kennel seeking someone to clean cages for $14 an hour.

“Not that I would disparage any job that anyone would have,” Kane said. “I think there should be dignity in all work. I think as a society we have to say, for those who care and support the people to live in the community, to try to have the best life possible, we need to fund the agencies to pay a reasonable rate.”

Kane spoke from the perspective of some three dozen private service providers in Rhode Island, the core of the state’s developmental disability service system. These agencies are trying to make ends meet while dealing with high job turnover and high vacancy rates, as well as the costly overtime it requires to ensure the safety of the vulnerable people in their care.

In the context of the state’s fee-for-service Medicaid reimbursement system, now in its eighth year, the concerns of the providers converge with those of a 2014 federal consent decree which spells out the civil rights of people who, through an accident of birth, spend a lifetime trying each day to rise to the challenge of diverse disabilities.

And in the past year, there has been growing pressure for change, both from those overseeing the implementation of the consent decree and from an expanding chorus of advocates.

In a “Week of Action” planned by the Community Provider Network of Rhode Island (CPNRI) March 26 through 28, providers and their supporters, including consumers and their families, will fan out under the State House rotunda to buttonhole individual legislators in the hours before the bell sounds shrilly at 4 p.m. calling the House and Senate to order.

In the fiscal year beginning July 1, Raimondo has proposed a $6.4 million budget increase targeted for pay raises, including $3 million in state revenue and $3.4 million in federal Medicaid funds. This sum would raise the wages of direct support workers by what state officials estimate as 43 cents an hour.

But the leaders of CPNRI and the Provider Council, another trade association, say that to stabilize the private system of developmental disability services, providers need about $28.5 million in state revenue, which would generate a roughly equal amount in federal Medicaid payments.

“We recognize that this is a substantial amount of money, but it is a result of chronic underfunding,” said Donna Martin and Peter Quattromani in a letter to Raimondo dated Jan. 9. Until March, Martin was executive director of CPNRI. Quattromani, executive director of United Cerebral Palsy of Rhode Island, represented the Provider Council.

Their reference to “chronic underfunding” alludes to “Project Sustainability,” the fee-for service funding model enacted by the General Assembly in 2011 with a $26-million budget cut. Project Sustainability was cited by the U.S. Department of Justice in 2014 as contributing to a segregated system of services that violated the integration mandate of the Americans With Disabilities Act.

With the closing of the Ladd School in 1994, Rhode Island was once first in the nation in de-institutionalizing adults with developmental disabilities and its efforts to include former residents in everyday life in the community. Today, 25 years after the Ladd School was shuttered, Rhode Island is ranked 32nd among the states in its inclusion efforts by CPNRI’s national affiliate, the American Network of Community Options and Resources.

Project Sustainability is currently the subject of two separate reviews, one by a special legislative commission and another by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), which has hired a consultant to scrutinize both the reimbursement rates and the fee-for-service model itself.

Between 2011 and 2012, Project Sustainability exacerbated a downward trend in funding for developmental disabilities that eventually leveled off but has not caught up with the pace of inflation, despite budget increases in recent years, according to a ten-year analysis done by CPNRI. The study used state budget figures and consumer price index information kept by the state Department of Labor and Training.

Chart Courtesy of CPNRI

Low wages have put Rhode Island service providers at a disadvantage in trying to recruit a variety of personal care workers like those who work with adults with developmental disabilities, experts say.

CPNRI reports that about one in three workers leave a developmental disability job every year, mostly, they say, because they can’t pay their bills. One in five positions remain vacant, driving up the cost of overtime necessary to ensure the safety of the vulnerable people in care, according to the trade association.

PHI National, long-term care consultants, have produced a chart comparing the earnings of personal care workers in Rhode Island, Connecticut and Massachusetts that shows Rhode Island with the lowest wages and the least buying power relative to the minimum wage.

chart courtesty of PHI and CPNRI

Policy experts say that basic demographic data for the nation indicates a shortage of personal care workers in the next few decades. That was one of the key messages delivered by Mary Lee Faye, executive director of the National Association of State Directors of Developmental Disabilities Services, to the Project Sustainability study commission in January.

Meanwhile, the House Fiscal Office estimates that the governor’s proposed raise for front-line developmental disability workers would add add 41 cents to their average hourly wage, lifting it from $12.27 an hour to $12.68 an hour. The overall $6.4 million pay hike doesn’t include raises for supervisors or job development and support coordinators, the House Fiscal Advisor, Sharon Reynolds Ferland, has told the House Finance Committee.

Providers say the state’s estimates don’t match up with actual costs. The state funds 35 percent of overhead related to employment, including mandatory costs like health and dental insurance, workers compensation insurance, payroll taxes, paid time off and other items, according to a CPNRI policy paper.

In reality, providers say, these employee-related expenses cost 64 percent[1] of wages – a point CPNRI’s Martin and the Provider Council’s Quattromani made in their Jan. 9 letter to Raimondo.

Providers fill the gap between the available state and federal Medicaid funding and the actual costs of employee-related overhead by reducing the amount of the wage increase passed along to workers. Kane, in his testimony, said that for the lowest-paid direct care workers, Raimondo’s planned pay increase will not even cover the cost of a separate proposal she has made to increase the state’s minimum wage for all workers from $10.50 to $11.10.

In the last few years, individuals with developmental disabilities, their families, and providers have gained legislative advocates, most prominently Sen. Louis DiPalma, D-Middletown, who is the first vice-president of the Senate Finance Committee.

DiPalma, as chairman of the special legislative commission studying Project Sustainability, convinced a consultant involved in developing that fee-for-service model to return to Rhode Island and testify about his work last November.

Mark Podrazik, a principal in the Arizona-based Burns & Associates, made it clear that Project Sustainability was shaped in a frantic effort to control costs.

Mark Podrazik * Photo By Anne Peters

The firm ultimately was paid a total of $1.4 million to develop Project Sustainability and monitor how it affected spending for developmental disabilities services. (The funding model contains no provisions for measuring the impact of services on individuals.)

Podrazik testified that some of Burn’s key recommendations were ignored, including a proposed base pay of $13.97 an hour for direct care workers that would increase within a year or two to $15 an hour. That was in 2011.

Today, eight years later, advocates are still chasing that $15-hour wage. About a month ago, DiPalma and Rep. Evan Shanley, D-Warwick, introduced companion bills to raise direct care workers’ pay to $15 an hour by July 1, 2020. The chairman of the Senate Finance Committee, William D. Conley, was among the co-sponsors of DiPalma’s bill.

More recently, DiPalma introduced a second bill that would require all private human service agencies under contract with the state to pay their employees at least 44 percent above the minimum wage at any given time. Both Conley and Senate President Dominick Ruggerio have signed on to this bill as co-sponsors.

A year ago at this time, Raimondo had proposed an $18.4 million cut in developmental disability services for reasons that were never spelled out in public. Raimondo rejected warnings of(BHDDH) that the move would result in waiting lists for services or cuts in programming.

The proposed cut appeared to be unacceptable to an independent court monitor who continues to oversee implementation of the 2014 consent decree. The agreement calls for integrated, community-based services that are inherently more costly than the facility-based system embedded in Project Sustainability.

In May, 2018, the monitor, Charles Moseley, obtained written assurances from Raimondo that she would continue to support the work of the consent decree, which in the moment meant restoring the almost all the $18-million cut.

In the courtroom, the judge who periodically oversees the status of the consent decree, John j. McConnell, Jr. of U.S. District Court, has indicated his willingness to issue orders to ensure that specific goals of the consent decree are met. At the same time, he said he couldn’t order the state to spend a certain amount to achieve them.

Meanwhile, Moseley has continued to keep abreast of budget developments. In February he wrote McConnell, saying Raimondo’s proposed budget “appears adequate” to cover a deficit in the current fiscal year and fund the consent decree in the budget beginning July 1.

Without mentioning how the Governor may have calculated developmental disability budgets in the past, Moseley made a point of saying he has received assurances that the latest figures are based on real-time data about the projected use of developmental disability services.

The state’s lawyer, Marc DeSisto, has assured him that “the Governor’s recommended budget accepts the most up-to-date projections for financing the current costs of the system to ensure no changes for individuals with DD and continued commitment to achieving Consent Decree outcomes,” Moseley wrote the judge.

Moseley put the current working budget for the private system of developmental disability services at about $229.4 million. Raimondo’s proposal adds about $4 million to finish the current fiscal year, for a total of $233.4 million. Moseley said the increase includes:

· $1 million for the estimated growth in the number of people receiving services

· $1.3 million for increased costs of providing services

· $645,000 to compensate for unrealized savings in moving group home residents into less costly residential options

· $500,000 in other priorities.

In the fiscal year beginning July 1, Moseley said, Raimondo would add about $7.3 million to the private developmental disability system, for a total of $240.2 million. That figure includes:

• $516,000 for continued growth in the number of people receiving services

• $2.7 million for increased costs in providing services.

• $6.4 million for the wage increase to direct care staff.

Those totals are offset by about $1.3 million in increased expectations for savings in residential costs and another million in savings from a reform initiative that didn’t start on time.

Moseley said all his figures were rounded off.

Deep in the background, BHDDH is quietly gearing up for a top-to-bottom analysis of Project Sustainability itself – a move applauded by DiPalma, providers, families and consumers. The lack of flexibility in services provided by Project Sustainability also has drawn the criticism of the court monitor.

Providers have said the funding formula does not allow them to plan on services for longer than three months at a time and makes it difficult for them to base their services in the community.

For example, Project Sustainability assigns staffing ratios according to the degree to which a person may be unable to do basic things independently, but doesn’t take into account the resources that person might need to get to a job – or hockey game – in the community.

Project Sustainability originally made it difficult for individuals to hold jobs in the community by providing work-related services only at the expense of other kinds of daytime supports.

In 2017, to comply with the work goals of the consent decree, BHDDH launched an add-on program of performance payments for providers for placing clients in community-based employment and for meeting job-retention goals.

DiPalma has said it is imperative that BHDDH finish a new rate model for private developmental disability services in time for Raimondo to introduce her budget to the General Assembly next January.

To satisfy the consent decree, the new design would have to focus on helping individuals lead regular lives in the community. Such a model would inevitably demand a greater financial commitment from the state and pose a new test of lawmakers’ values.

RI Governor's DD Budget Would Add $8.7 Million in Medicaid Funding For Wages, Higher Costs

By Gina Macris

Rhode Island Governor Gina Raimondo’s recently released budget proposal would add nearly $8.7 million in new funding to the system of privately-run services for adults with developmental disabilities in the next 17 months, through June 30, 2020.

Most of that overall $8.7-million-increase, $6.4 million in federal and state Medicaid money, would fund raises for workers of some three dozen private agencies that provide developmental disability services under contract with the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The raises would take effect July 1. Funding for the added wages - an estimated 44 cents an hour – is carved out in the budget bill for Fiscal Year 2020 that Raimondo has submitted to the General Assembly.

The budget bill also requires that almost $1.6 million in federal-state Medicaid funds be earmarked for technical assistance to private providers changing from segregated care to community-based, integrated service to comply with a 2014 federal consent decree.

The current overall spending level for developmental disabilities, $271.7 million, would increase to $273.1 million for the budget ending June 30. In the next fiscal cycle beginning July 1, the spending ceiling would rise to nearly $280.9 million, including federal, state and miscellaneous sources of revenue.

The Division of Developmental Disabilities (DDD) draws more than half the resources assigned to BHDDH – which is currently budgeted for a grand total of almost $422.5 million. Under Raimondo’s plan, the bottom line for the entire department would grow to about $448.5 million in Fiscal 2020 – an increase of $26 million, including about $19.7 million in supplemental funding for the existing budget.

Developmental disability services are financed through the federal-state Medicaid program, with the federal government paying nearly 53 cents on the dollar.

The governor’s executive summary, however, tends to focus on the state outlay alone. It says $3.1 million in state funds would be earmarked to cover an existing deficit and an additional $3.3 million would be set aside in the fiscal year beginning July 1 for increased caseload costs.

Those budget items, combined with the state’s share of the $6.4 million proposed wage increase - $3 million – add up to $9.4 million, nearly twice the overall $5 million in new state tax dollars that Raimondo would apply to developmental disabilities for the remainder of the current fiscal year and the next one.

The state would have to use savings in other areas to fully fund Raimondo’s plan for developmental disabilities, but neither the budget language nor the governor’s narrative spells out which cost-cutting measures would fill the gap.

The first-quarter spending report for BHDDH put the projected deficit in developmental disabilities at a total of $7.6 million for the current fiscal year, including federal and state funding.

The updated report for the second quarter will not be ready until Jan. 31, according to BHDDH officials.

But at a recent press briefing on the budget, Rebeca Boss, the BHDDH director, said she is satisfied that the governor’s proposal will enable the department to balance its current budget.

Among other things, the plan would restore money in the current budget that the DDD otherwise would have saved if it had won federal approval for a “Health Home,” a Medicaid option featuring a managed-care approach that also provides for a third-party to coordinate services for individuals.

The Health Home would help DDD comply with a Medicaid rule for Home and Community Based Services which requires case management to be separate from funding or service delivery. Currently DDD is responsible both for funding and for case management, which Medicaid perceives as a conflict of interest.

Boss said BHDDH has not yet submitted an application for a Health Home option for developmental disabilities. The budget assumes that a health home plan for developmental disabilities will be approved and go into operation during Fiscal 2020, which begins July 1.

Medicaid will reimburse 90 percent of the state outlay for health homes for a maximum of two years. After that period, the reimbursement rate for health homes will drop back to the regular rate for Rhode Island, whatever it may be at that time..

To help close the current deficit, the governor recommended an additional $273,412 in state revenue for BHDDH to pay homemaker licensed practical nurses who work with adults with developmental disabilities. The Executive Office of Human Services granted them a slightly higher pay increase than BHDDH had budgeted and the General Assembly had approved.

In adding $3.3 million in state revenue for “caseload” expenditures for the 2020 fiscal year, Raimondo’s executive summary said she “accepts the Department’s (BHDDH’s) most up to date projections” on costs, “ensuring no changes to services for DD consumers and continued financing to improve achievement of consent decree mandated services.”

Last year at this time, Raimondo had proposed cutting a total of more than $18 million in federal-state funding from developmental disability services, with a spokeswoman for the Office of Management and Budget saying the proposed reduction was based on calculations made from “estimated growth rates in the cost of providing services.” She did not elaborate.

Raimondo, pressed by the independent court monitor overseeing the implementation of a 2014 federal civil rights consent decree, eventually restored the funding and pledged the state’s support of the work ordered by the federal court.

The consent decree requires Rhode Island to correct violations of the integration mandate of the Americans With Disabilities Act, reinforced by the 1999 Olmstead decision of the U.S. Supreme Court, by ending its over-reliance on sheltered workshops and segregated day care.

This year, according to Boss, BHDDH submitted cost projections on the basis of actual claims, as directed by the Executive Office of Health And Human Services, rather than individual funding authorizations.

In the process of updating projections, the data was refined to remove claims that had been double-counted on Medicaid rolls of both BHDDH and EOHHS, according to the executive summary of the budget.

For Fiscal 2020, the governor’s budget summary highlighted three additional areas for savings:

• ·A continuation of “residential rebalancing”, a multi-year effort to reduce the number of people in group homes, a cost-saving measure that also is intended to provide more “community-based placements such as shared living.” The budget projects $1.5 million in “residential rebalancing” in 2020.

• Closure of one state-operated group home for an estimated savings of nearly $92,000. The staff in that location will move to other sites, reducing the need for overtime in the state-run system.

• So-called “right sizing” of staffing at the state-run group home system to realize additional projected savings of $202,721. “Right-sizing” means staffing patterns will be reassessed and employees will re-bid jobs. This change is expected to reduce overnight staffing and further reduce overtime costs.

Burns & Associates President To Speak To RI Senate Commission Studying DD Reimbursement

A special commission of the Rhode Island Senate on “Project Sustainability” will meet Tuesday, Nov. 13 to hear a presentation from the president of a healthcare consulting firm which helped the state develop its current fee-for-service Medicaid reimbursement system for private providers who serve adults with developmental disabilities.

The speaker, Mark Podrazik , is the president and co-founder of Burns & Associates, an Arizona-based company which advised the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) on recommendations BHDDH made to the General Assembly. The legislature made the final decisions about the reimbursement model, which was enacted in 2011.

Burns & Associates was paid nearly $1.4 million for their work developing “Project Sustainability” and analyzing its fiscal impact between 2010 and 2016, according to state records.

Tuesday’s public meeting will begin at 3 p.m. in the Senate Lounge of the State House. Public comment is invited at the end of the session, according to the commission chairman, State Sen. Louis DiPalma, D-Middletown. The commission includes 19 members from state government and a cross-section of the developmental disability community. Among them are two consumers and representatives of advocacy groups and service providers.

DiPalma: RI DD Services Need More Than $18 Million To Continue Consent Decree Reforms

By Gina Macris

One of the Rhode Island Senate’s chief advocates for adults with developmental disabilities applauded the House and Senate consensus on restoring $18.4 million to reimbursements for private service providers but said that amount is not enough to enable the state to continue transforming its programs to comply with the Americans With Disabilities Act.

Reacting to the latest positive revenue estimates, Sen. Louis DiPalma, D-Middletown, said May 11 that reversing a cut planned by Governor Gina Raimondo for the fiscal year beginning July 1 would be a “phenomenal step forward.” 

But DiPalma, who has closely followed developmental disability issues, said he hopes the General Assembly can find additional funds so that the state can continue to invest in the goals of a 2014 civil rights federal consent decree and also, for a third consecutive year,  raise wages for direct care workers who provide services to adults with developmental disabilities. 

Restoring $18.4 million to private providers, and an additional $3 million to a state-run network of group homes, would bring the developmental disabilities budget to about $272.2 million. That reflects the pace of spending for the current fiscal year.

DiPalma said developmental disabilities will need about $275 million to $280 million in federal and state Medicaid funding during the next fiscal year to continue the decade-long transformation of services from a segregated to an integrated model, as mandated by 2014 consent decree with the U.S. Department of Justice. 

DiPalma’s remarks came the day after the state Revenue Estimating Conference concluded May 10 that revenues for the next 14 months are expected to run a total of nearly $135 million ahead of estimates made in November.  That total includes an additional $75.5 million for the fiscal year ending June 30 and another $59.4 million in Fiscal 2019, which begins July 1.

The $18.4 million gap in reimbursements to private providers for Fiscal 2019 refers tMo both federal and state Medicaid funds, with the federal government providing roughly 52 cents on the dollar.  That means the state would have to put up about $9 million to close the $18.4 million hole.

House Speaker Nicholas A. Mattiello and the President of the Senate, Dominick J. Ruggerio, issued separate statements saying they were pleased that revenues exceeded prior estimates. In recent days, they also have listed developmental disabilities as one of the priorities that must be addressed, although neither viewed the extra cash as a panacea, because of multiple unmet demands on the state budget. 

Mattiello’s statement said, “This offers some more options for us as we consider some very tough choices in our budget deliberations. I am committed to making sure we pass a responsible budget that addresses the critical needs of our citizens and continues to move the state forward.”

In addition, on May 11, he said the House “always” planned to address the $18.4 million gap between current spending for developmental disabilities and the governor’s proposal for the budget cycle beginning July 1.

Ruggerio, the Senate president, said, “As we work together to craft a responsible budget, it is important to consider that a significant portion of this increase is one-time revenue that may not continue in future years, and that there are significant gaps in the current budget proposal that need to be filled. However, the additional revenue does provide some flexibility to address Senate priorities such as funding for developmental disabilities care within the BHDDH budget and funding for DCYF.” Ruggerio referred to the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, and to the Department of Children, Youth and Families.

While adequate funding is the most immediate issue, there are other regulatory matters that concern a federal court monitor and the BHDDH administration. The Senate has signaled it is open to change, both in the short term and the long run.

In a brief telephone interview May 11, Mattiello said he, too, is open to considering changes, although he did not get  into specifics.

“I know the needs are significant,” he said. “I’ve got constituents in the community that have developmentally challenged family members. These folks need help, and I’m very, very available to that.”

“I’m open to study and to doing things better,” Mattiello said. “The department (BHDDH) and the administration certainly can do things better.”

“These are complex issues,” Mattiello said.

The Senate has passed a resolution authorizing a 19-member commission to study the fee-for-service reimbursement structure, with a report due March 1, 2019.

In addition, the Senate Committee on Health and Human Services is to vote May 15 on a bill to change the timing of individual funding authorizations for developmental disability services from quarterly to an annual basis.

An independent federal court monitor in the consent decree case, administrators at BHDDH, and private service providers all have found the quarterly authorizations problematic for a variety of reasons.

Providers have said the quarterly authorization system does not allow them to do any long-range budgeting. Anecdotal accounts of families unable to find services indicate a tendency in recent years for providers to avoid taking on clients with complex and costly needs for fear of financial risk that they may not be to cover.

Meanwhile, the Director of Developmental Disabilities testified at a recent Senate Finance Committee meeting that quarterly authorizations are administratively burdensome. The 3700 individual authorizations in the division’s caseload must be entered manually in the state reimbursement system four times a year, said the director, Kerri Zanchi. 

At the same time, DiPalma, the first vice chairman of the Senate Finance Committee, noticed that in some years there are significant dips in the caseload numbers in April and October – as many as 145 or 150.  This timing coincides with the governor’s budget preparation process in the fall and the legislature’s refinement of the final figures in the spring.  In general, each client represents an average of $60,000 in federal-state Medicaid funding. 

One reason for that variability might be data entry errors, according to Donna Martin, executive director of the Community Provider Network of Rhode Island, a trade association of service providers.

The bill requiring annual authorizations says they are necessary to allow adults with developmental disabilities to plan their services in a “flexible manner consistent with their stated goals and plan of care,” in accordance with the principles of the Centers for Medicare and Medicaid Services and the Home and Community Based Services Final Rule. Among other things, the Final Rule requires service plans to be based on an individual’s needs and preferences.

The bill would not preclude the state from changing reimbursement rates to providers in the middle of a fiscal year, but they and their clients would have to receive 45 days’ notice.

RI Direct Care Workers To See Raises in October Paychecks; Legislator Says They Deserve More

By Gina Macris

Raises for direct care workers in Rhode Island, including those who serve persons with developmental disabilities, are scheduled to show up in paychecks in October. But the increases are unlikely to fix problems caused by wages that many consider inadequate to stabilize a workforce plagued by high turnover, high vacancy rates, and high overtime. 

Even after receiving the pay hike, many workers will be forced to continue working second jobs to make ends meet.

Meanwhile, their employers will still have to scramble to fill vacancies, as Massachusetts prepares to pay $15 an hour for the same work beginning July 1, 2018.  Currently, one in six jobs goes unfilled, driving up overtime costs for developmental disability providers, according to the Community Provider Network of Rhode Island, (CPNRI), a trade association.  

Those who work with adults with developmental disabilities in Rhode Island make an average of $11.14 an hour, and an estimated increase of 42 cents would bring that hourly rate to $11.56. The exact increase is expected to vary from one agency to another, depending on benefits offered.

Unless the workers are single adults supporting only themselves, $11.56 an hour is not enough for a minimum subsistence wage – no restaurant meals, entertainment or savings accounts - that nevertheless avoids food stamps or other public assistance, according to the Living Wage Calculator at the Massachusetts Institute of Technology.

In Rhode Island, 41 percent of those working with adults with developmental disabilities have taken more than one job to make ends meet, according to CPNRI. The trade associaation presented figues to the General Assembly earlier this year that show 65 percent of direct care workers were heads of household in 2014, and 48 percent of them received public assistance between 2011 and 2013, the latest period for which data was available.

Entry-level positions for direct care positions at developmental disability service agencies generally hover a little above the minimum wage, currently $9.60 an hour. But the minimum wage is to get a 50-cent bump to $10.10 on Jan. 1 and another increase, to $10.50 an hour, on Jan. 1, 2019.

 In the current budget, $6.1 million in federal-state Medicaid dollars have been set aside for raises for those who provide direct care to adults with developmental disabilities, effective July 1.

Governor Raimondo also asked for a total of $5.2 million for increasing the pay of home health care aides, but the General Assembly delayed implementation of that raise until Oct. 1. House spokesman Larry Berman said that the way a similar increase was paid out to home care workers in 2016 made implementation problematic prior to Oct. 1 of the budget year and that issue was taken into account this year. The delayed implementation also saves more than $600,000 in state funds.  

Developmental disability service agencies also can expect to see higher reimbursement rates Oct. 1, but those increases will be retroactive to July 1, in accordance with language in the budget.

State Sen. Louis DiPalma, D-Middletown, who has led a call for improving the prospects of direct care workers, agreed that the direct care workers are treading water, in effect, relative to the minimum wage.  

He said he is well aware that raises enacted in 2016 and 2017 are not enough to compensate them for complex work that is often also physically demanding.

The new Amazon warehouse in Fall River is paying more than $12 an hour to start, he said.

In the fall of 2016, DiPalma launched a “15 in 5” campaign to increase pay of home health care aides and direct care workers to $15 an hour in five years – by July 1, 2021.

There appears to be broad sentiment in the legislature that direct care workers deserve better, judging from the number of bills introduced in the General Assembly earlier this year to speed up the climb to a $15 hourly rate. One measure, sponsored by the House Deputy Majority Leader, Rep. Jean Philippe Barros, D-Pawtucket, would have set Jan. 1 as the implementation date for a $15 hourly wage.

But the bills appear to have been more a gesture more than anything else.

DiPalma, first vice-chairman of the Senate Finance Committee, said that the state’s finances cannot support that kind of a boost immediately.

The state faces the prospect of a $237 million deficit in the fiscal year that begins next July 1, according recent memos from the State Budget Officer, Thomas Mullaney, and the Senate Fiscal Advisor, Stephen Whitney. And that estimateddeficit does not include $25 million in unspecified savings which the state still must trim from the current budget. Jonathan Womer, Director of the Office of Management and Budget,  has expressed skepticism that all the cost-cutting assumptions in the enacted budget can be achieved.

Department heads preparing for the next budget cycle are being asked to cut expenditures by 10 percent, with one exception being entitlement programs, like the federal-state Medicaid program, which funds the pay for home health care aides and developmental disability workers, among many other services. 

RI Senate To Vote On $256.5 Million DD Budget

By Gina Macris

Rhode Island Governor Gina Raimondo’s request for an overall $10 million increase in developmental disability spending in the next fiscal year appears to be headed for full approval by the General Assembly, as the Senate prepares to vote on the $9.2-billion state budget before the current budget cycle closes June 30 and the July 4 holiday weekend begins. 

On June 22, the House ratified the recommendation of its Finance Committee, with Speaker Nicholas A. Mattiello, D-Cranston, saying in advance of the vote that legislators have heard the message of direct care workers making poverty-level pay in high-responsibility jobs.

The Senate Finance Committee is scheduled to act on the budget at a hearing June 27 at 2:30 p.m. in Room 211 of the State House.  A floor vote in the Senate is expected Thursday or Friday.

About $4 million of the developmental disability spending increase would be applied to the current budget and an additional $6 million would go into the new budget cycle beginning July 1. The total allocation for developmental disabilities in the next fiscal year would be $256.5 million.

Even as the Rhode Island House was deliberating, U.S. Senate Republicans in Washington unveiled a health care bill that would severely cut Medicaid funding -– the backbone of essential medical care and other support services for the poor and disabled throughout the country. Within 24 hours, enough Republican opposition to the bill emerged in the Senate to threaten its passage. 

The proposed state budget in Rhode Island includes a total of $11 million for one-time raises for home health care workers and those who work directly with adults with developmental disabilities. Those wage increases would raise the average hourly pay for developmental disability workers from about $11.14 to about $11.69 an hour.

The original language in Governor Raimondo’s proposal used a separate budget article to spell out assurances that the money set aside for the raises could not be used for anything else, but the House version eliminates that article and embeds those mandates elsewhere in the revised budget bill. 

Workers can expect to see the incremental boost in pay no later than Oct. 1. Three months later, on Jan. 1, 2018, the House-approved budget would raise the minimum wage from $9.60 to $10.10 an hour. On Jan. 1, 2019, the minimum wage would advance again, to $10.50 an hour.

State Sen. Louis DiPalma, the leader of a drive to raise the pay of developmental disability workers to $15 an hour by July 1, 2021, said the day after the House vote that he has already begun work on the next phase of the campaign.

Last fall, DiPalma’s “15 in 5” campaign issued an early call for direct care raises, while the executive branch was still working on the budget proposal. In January, when the governor submitted her budget to the General Assembly, she highlighted the pay increases, along with a hike to the minimum wage and other initiatives.  

Several bills intended to speed up the timetable for a $15 hourly wage were introduced in the House during the current session, including one sponsored by Rep. Jean Philippe Barros, D-Pawtucket, Deputy Majority Leader, which would set the starting date for that increase to next Jan. 1.

The prospective budget doesn’t support a $15 hourly rate, but Barros still got a hearing on his bill before the House Finance Committee on June 21.

Direct care workers do an “awful lot of work for some of the neediest” residents of Rhode Island, and “they certainly deserve the benefit for their labor,” Barros said.

Massachusetts is set to increase the wages of direct care workers to $15 an hour in 2018, a development that could exacerbate already high turnover in direct care work in Rhode Island.

Figures on turnover presented to the General Assembly in recent months range from 30 percent a year to 60 percent of new hires in the first six months. There are about three dozen developmental disability service agencies operating in Rhode Island and each one has a different rate of turnover.

Testifying in favor of Barros’ bill, Robert Marshall, spokesman for the Rhode Island Developmental Disabilities Council, said that high turnover, a problem for years, has had a negative impact on those who need care.

Moreover, the nature of the work is changing to emphasize more individualized services, Marshall said, an apparent allusion to new federal Medicaid requirements and federal court enforcement of changes in daytime developmental disability services under provisions of a 2014 consent decree.

The greater individualization means that jobs in the direct service field are no longer interchangeable, he said. 

“Massachusetts will be very happy for us to train the staff and then give them a nearly 50 percent increase” in pay, Marshall said.  In other words, he said, a worker in East Providence can drive an extra three miles and do the same job in Seekonk, Mass., for significantly more money.

The money that is now spent on training new workers and overtime to fill critical gaps in services would probably cover most of the pay increase, Marshall said.

Part of the $10-million increase in the developmental disability budget would be used to fill a $3 million shortfall in the current fiscal year in supplemental payments to private providers and to add another $500,000 to that allowance in the budget cycle that begins July 1. 

The combined increases would hike supplemental payments from $18.5 million to $22 million a year –about 10 percent of all reimbursements made to private providers of developmental disability services – a level that DiPalma, the vice-chairman of the Senate Finance Committee, has flagged as a sign that the standard funding formula for individual clients is not working.

The supplemental payments reflect successful appeals, on a case-by-case basis, of a funding formula applied to a controversial assessment which Rhode Island uses to determine an individual’s ability to function independently. The funding formula does not take into account a client’s goals and preferences in determining individual authorizations – a problem cited by a federal court monitor overseeing reforms to the developmental disability system.

All developmental disability services in Rhode Island are funded by Medicaid at a ratio of slightly more than one federal dollar for every state dollar.

Medicaid has long been an entitlement program in which the federal government matches state outlays for a wide range of services, ranging from health care and nursing home services to specialized educational and therapeutic services for children with disabilities and community-based supports for disabled adults.

The U.S. Senate Republican bill – devised behind closed doors and released on June 22 - would set per-capita limits on federal Medicaid reimbursements to states and threaten many of the services Rhode Island now offers.

The entire Rhode Island Congressional delegation has slammed the bill, saying it amounts to a massive transfer of wealth to the rich at the expense of the poor, the elderly and the disabled through $600 billion in tax cuts.

In a statement, Sen. Jack Reed said, “Trumpcare-supporting Republicans can make all the claims they want, but their motives are obvious: they want massive tax cuts for the wealthiest at the expense of hardworking Americans whose lives, in many cases, depend on access to care.”

Sen. Sheldon Whitehouse said the measure “would gut Medicaid with even deeper cuts than the wretched House version. This will blow huge holes in state budgets, forcing terrible choices between opioid treatment, care for seniors, and students with disabilities. And that’s just the beginning.  It goes after women’s health care. It would allow insurance companies to charge seniors more, and sell plans that don’t offer the basic care Americans expect. It would be bad for Rhode Islanders.”

Governor Raimondo said she will join Reed, Whitehouse and Reps. David Cicilline and James Langevin in “active opposition to this disastrous proposal." 

She accused Congressional Republicans of “trying to pass an immoral piece of legislation,” putting “American and Rhode Island lives at risk so that millionaires and billionaires can get a tax cut.”

Mattiello: RI Direct Care Workers Have Been Heard

By Gina Macris

During recent deliberations on the state budget that emerged from the Rhode Island House Finance Committee last week, legislators considered very carefully testimony about the plight of the state’s most vulnerable citizens and those who care for them, particularly with respect to nursing homes, House Speaker Nicholas Mattiello said in a briefing June 20.

Mattiello                         RI state PHOTO

The Finance Committee’s budget prevents any further reductions to Medicaid reimbursement rates to hospitals and nursing homes and commits $11 million in federal and state Medicaid funds to raise the pay of home health care aides and those providing direct support to adults with developmental disabilities.    

“Thank you for the viewpoint,” he said of those who testified for the direct care raises, and we’re glad that in these difficult fiscal times we were able to accommodate that,” he said.

Mattiello’s remarks signaled a growing awareness over the last year about poverty-level wages and high turnover which has destabilized the direct care field and, many say, affected the quality of care.

Along the same vein, the proposed $9.2 billion spending package approved by the House Finance Committee promises to restore free bus passes for the elderly and disabled, at a cost of $3.4 million a year for the next two fiscal years.

The compromise budget that will go before the full House June 22 also puts $26 million into Mattiello’s signature car tax phase-out, enabling 150,00 vehicles to fall off the property tax rolls in the fiscal year that begins July 1. And it partially funds Governor Gina Raimondo’s free tuition plan, allowing two years of free attendance at the Community College of Rhode Island for students who maintain a 2.5 grade average and meet other conditions.

Mattiello said he was proud of the budget, which uses a variety of approaches to close a $134-million revenue gap and still manages to deliver on promises made to Rhode Islanders.

“I didn’t say I was happy with this budget. I said I was very proud of this budget,” Mattiello said.

“You work with what you have and you maximize the benefit to the taxpayers. That’s exactly what we did,” Mattiello said.

State Rep. Joseph N. McNarmara-D-Warwick, echoed Mattiello’s remarks, saying he was particularly proud of the “core values we have represented as the majority of Democrats” and "have defended in a tough budget,” including free tuition, raises for direct care workers and the prevention of erosion of reimbursements to hospitals and nursing homes.

But Mattiello interjected, “I’m going to stop you, Joe. This is not a Democratic caucus. These are the values of the House of Representatives.” McNamara, the chairman of the House Committee on Health, Education and Welfare, also chairs the state Democratic Party.

As for the cost-cutting that must be done to balance the budget – including $25 million in unspecified reductions – Mattiello said: “We conferred with the Governor and the Senate. The Governor believes that although this will be difficult, it’s attainable and we agreed it can be done. “

While the budget uses one-time revenue to close some gaps, it will be paired with one-time expenses and will not add to the state’s structural deficit, Mattiello said.

Even though revenues are lower than expected this year, the economy seems to be going in the right direction, with unemployment down to a level not seen since before the recession of 2008, Mattiello said.

“This is our year to continue our momentum,” he said.  “We’re not going to tax our way” out of the revenue shortfall, “we’re not going to cut our way out of it,” but “we hope to grow our way out of it” as the economy continues to improve.

OP-ED: Trump's Trump's Medicaid Plan Would Force Draconian Choices On People With DD

By Maureen Gaynor

Maureen Gaynor (updated photo)

Dread. Our President has embedded dread into my vision of what my daily existence may be like in the near future. You see, I am a woman who has severe athetoid cerebral palsy.  I depend on people to assist me in just about every physical aspect of my life.  More about my own situation in a moment, but I am not alone in this feeling of dread.

There are about 4,200 people in Rhode Island who have developmental disabilities, according to the state, and we all depend on Medicaid, which supports programs to assist us in living our lives as inclusively as possible.

But President Trump has proposed a budget that would decimate Medicaid.  By capping Medicaid spending, President Trump would cut an estimated $610 billion to $1.3 trillion over the next decade, with the higher figure also taking into account the effects of the health care bill that recently passed the House. When I look up ‘decimate’ in the dictionary, it means to “kill, destroy, or remove a large percentage or a part of.” That is a word used to describe wars, plagues and atrocities that should be avoided at all costs to preserve human life. Let’s take a good, hard look at the very real effect these astonishing budget cuts would have on people with disabilities, starting with my own case.

I have done my hard work getting where I am today.  I come from a hard-working family that respects hard work and also values the concept of the family down to the core. My parents, who never got degrees but valued education, expected all of their four children to go to college, and they succeeded in that goal.  I was the one who drew the short straw when I was born a half century ago.  But I have learned not to let my cerebral palsy define me. And I wasn't given a free pass out of being successful.  I wanted to be successful, and that drive is even stronger today.  I became convinced that I could design buildings and residential homes to be more accessible for the disability community. In 1990, I graduated from New Hampshire Technical College with a General Associates degree in Building Construction Technology, followed by graduating from Roger Williams University with a Bachelor of Science degree in Architectural Studies. Unfortunately, jobs have been sparse since 1993.  Given my education and experience in the construction field, and my love in designing kitchens, I am pursuing work in kitchen design.

But my cerebral palsy DOES limit what I am able to do, physically, for myself. As I said, I depend on people to assist me in just about every physical aspect of my life. Activities like eating meals, dressing, showering, brushing my teeth, doing laundry, using the bathroom and a multitude of other activities I need assistance completing. I need someone to adjust the head pointer I am using to write this article.  All of these activities of daily living are needs—my needs are not “luxuries.”  I need to eat, or I will starve.  I need to use the bathroom, or I will get severely ill.  I need to shower, or I will smell.

President Trump, along with his Secretary of Health and Human Services, Tom Price, want to impose Medicaid Block Grants on all states, based on each state’s per capita ratio.  This means the federal government will allocate a pre-determined Medicaid budget for each state.  Each state must work within that budget.  Each state has its own Medicaid budget.  People with disabilities have different levels of need.  How is such a strict Medicaid budget going to cover all of the variable needs of people with disabilities?  President Trump has difficulty understanding the Constitution, let alone the needs, and the dreams, of people with disabilities.  I am convinced that President Trump hasn't sat down and had a genuine conversation with a person with a developmental disability.  Dread sets in once again.

So, what would my life under a Medicaid Block Grant system?  My dread comes from the expectation that services will be severely cut back, because the state will not be able to make up for the federal cutbacks and will have to stretch out the available dollars by reducing services to everyone. Here’s what I fear will happen to me:

 My supports to find employment will immediately disappear.  My hopes and dreams centered around working as a kitchen designer would be dashed because I wouldn't have any community hours.  Instead, that money would have to be spent on supports for someone else to get out of bed.

My daily community supports would cease. Getting out of the house would be another “luxury” for people with disabilities. If I cannot go to the supermarket, how would I buy groceries?  Well, I guess I will have to find someone who will shop for me.

If these devastating Medicaid cuts pass and my services are reduced, I would need to stay in bed three hours longer each day,  because I can’t get up on my own and there would be no one to help me.  I would have to go at least 14 hours without eating.  By the time I would get up, I’ll probably eat around 1 pm.  What would I eat—breakfast or lunch?  I would have to eat a lot because I would only have time to eat two meals a day.

 If I’m not mistaken, don't prisoners get three meals a day?  I think they do.  I, who never committed a felony, who was born with a brain disorder, and who has graduated college from Roger Williams University will be only allowed to eat two meals a day because President Trump dreams of building this “magnificent” wall on the Mexico border.

Can somebody tell me where the fairness in this scenario?  If I was face-to-face with the President, Tom Price or Paul Ryan, Speaker of the House, could anyone of them explain to me where the fairness is?  I don't think anyone of them could give a reason why it is more important to have a border wall rather than providing people with disabilities adequate time to eat three meals a day, and to have a life that they can call their own.

My biggest fear is the re-emerging of state institutions if these Medicaid cuts go through.  Medicaid money would run so thin that there will not be any other choice to care for the vulnerable people with disabilities by re-creating “collective housing” to care for their basic needs.

We cannot allow this administration to turn back the hands of time on the progress the disability community has made in the last century. The mindset of this administration is deplorable. We must rise up as a country and recognize all people must be treated equal.

Maureen Gaynor, of Smithfield, RI, is a social activist. She was one of four people who were arrested in Sherborn, Mass. on Inauguration Day, Jan. 20, after a reading of grievances against President Trump and a peaceful procession that blocked a road, prompting police to stop traffic. Gaynor can be reached at mogaynor@cox.net

RI Legislation Aims For Greater Accuracy And Transparency In Budgeting BHDDH, DCYF Costs

By Gina Macris

Companion bills in the General Assembly would require cost estimates for services to adults with developmental disabilities and children in state custody to become part of Rhode Island’s semi-annual Caseload Estimating Conference, a key budgeting guide. 

The bills, sponsored by Sen. Louis DiPalma, D-Middletown; and Rep. Teresa A. Tanzi, D-Narragansett and South Kingstown; specify that the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and the Department of Children, Youth, and Families. (DCYF) would submit all their service costs, funded through Medicaid, to the Caseload Estimating Conference. 

Both BHDDH and DCYF have been plagued by chronic deficits. At BHDDH, a 2014 federal consent decree enforcing the 1999 Olmstead decision of the U.S. Supreme Court is putting additional demands on the developmental disabilities budget.

The executive branch prepares BHDDH budgets on the basis of “target” figures set by the Office of Management and Budget. In the past, BHDDH officials have said that the targets are not enough to cover actual service costs. This year, Governor Gina Raimondo accepted BHDDH figures in submitting her budget proposal to the General Assembly.

In a statement, DiPalma said, “The legislation is about honest and transparent budgeting. We need an accurate accounting of how many individuals we are serving in these vital programs, so that our budget reflects the associated costs, or makes program adjustments, or both.” 

He said about 3,000 children and teenagers are in DCYF care and roughly 4,000 adults with developmental disabilities depend on services from BHDDH.

Tanzi said, “Accurate caseloads will ensure the General Assembly is able to fully understand and appreciate the budgetary requirements of the agency to meet their obligations to our state’s vulnerable children and families. This legislation is about caring for our most vulnerable citizens but doing so in the most responsible way for the taxpayers.”

Medicaid accounts for about 31 percent of the state’s budget, according to the House Fiscal Office. That is roughly $3 billion in expenses annually, with each state dollar matched by slightly more than one federal dollar. Of all Medicaid funds, BHDDH spends 12.3 percent of and DCYF accounts for 1.4 percent.

In addition to adding BHDDH and DCYF to the Caseload Estimating Conference, DiPalma’s and Tanzi’s bills spell out the managed care reporting requirements of EOHHS in greater detail.

Current law allows agencies other than DHS and EOHHS to participate in the Caseload Estimating Conference but does not require them to contribute data.  It is not clear why DCYF and BHDDH have not been included in the Caseload Estimating Conference in the past.

The Caseload Estimating Conference runs back-to-back with the Revenue Estimating Conference in November and May. There are three principals; the House and Senate fiscal advisors and the state budget officer, who reach agreement through consensus on the latest estimates for revenue and for expenses in the human services, including Medicaid and a general public assistance program of about $1.5 million.

The governor relies, in part, on the November conference report to prepare the budget that is submitted to the General Assembly in January. The House and Senate use the results of the May conference as a basis for finalizing budget negotiations. 

The bills: S 0266 and H 5841

Gallivan's Short Stint in RI Brings Plenty of Change, Starting with Plans for Better DD Assessment

Jane Gallivan   Photo by Anne Peters

By Gina Macris

In just the few months she has served as interim director of Rhode Island’s Division of Developmental Disabilities, Jane Gallivan has been instrumental in changing the state’s approach to providing services for individuals with intellectual challenges.

On the most concrete level, she has set plans in motion to adopt an improved version of a controversial assessment – the Supports Intensity Scale (SIS) – to more accurately determine the needs of clients.

With help from the Executive Office of Health and Human Services, Gallivan also has shifted strategies for presenting the division’s budget so that the state Budget Office and the General Assembly better understand what it means to support individuals with developmental disabilities.

The initiatives Gallivan has begun, and the tone she has set, are expected to continue after her role changes Friday, Sept. 30, to that of long-distance consultant.

Gallivan, 68, is taking her 101 year-old mother to Florida for the winter, a commitment she made before Rhode Island officials approached her for short-term help in leading the developmental disabilities division.

She will continue to monitor and guide reforms and will serve on the committee that will screen applicants for the division’s permanent chief.

A former state-level director in Maine and Delaware, Gallivan already has been spreading the word about the director’s job through her nationwide contacts in the field of developmental disabilities.

As she prepared to end her full-time role in Rhode Island, Gallivan shared her perspective on the future of developmental disability services in Rhode Island.

Major Changes Coming to Every State

Gallivan says all state developmental disability service systems are in the midst of a sea change because of sweeping new Medicaid regulations.

The rules say that all services for the elderly and individuals with all types of disabilities must be provided in the least restrictive setting that is therapeutically appropriate, which is presumed to be the community.

After March, 2019, Gallivan said, Medicaid will no longer pay for sheltered workshops or segregated day programs after March, 2019.  Sheltered workshops don’t fit the Medicaid’s definition of “community,” she said.

Federal Medicaid dollars pay for half the cost Rhode Island’s developmental disability services.

The federal consent decree requiring Rhode Island to shift to community-based jobs and activities may put the state ahead of the curve, she said.

Both the consent decree in Rhode Island and the changed Medicaid regulations nationwide get their authority from the 1999 Olmstead decision of the U.S. Supreme Court, which is in effect a desegregation order for individuals protected by the Americans with Disabilities Act. 

Individuals and families who struggle to find appropriate services may not yet see any change in their lives.

Gallivan says she worries about a caseload ratio that is “way too high” - one social worker to every 205 clients.

Social workers are “really concerned about helping people out,” she said, “but like any other service system, they are often, because of the ratios, dealing more with people in crisis”  or those just entering the system, rather than “supporting the people who are not the squeaky wheel.”

“No one wants to expand state government,” but state government must still “figure out how we’re going to put more resources into case management,” Gallivan said.

A New Way to Assess Service Needs

Since taking the interim director’s job in July, Gallivan has been “looking under the hood,” as she put it, to understand the barriers that need to be removed to allow “people to really get out and enjoy activities in the community, to get better connected, to explore new job options and so forth.”

She’s been searching for hindrances in state regulations, the way programs are funded, and the way clients have been assigned individual funding based on “tiers,” or levels of need.

The Supports Intensity Scale, (SIS) is a lengthy questionnaire used since 2011 to determine the individual level of funding according to “tiers” labeled A through E, with E being the costliest.

In the last few years, the SIS been the single most emotional flashpoint for families, many of whom have complained bitterly not only about results that yield insufficient funding, but that interviewers argued with them or recorded answers different than the ones they gave.

In the next several months, Gallivan said, the state will move to what she hopes will be a more accurate version of the assessment, with additional questions focusing on medical and behavioral needs.

SIS Interviewers will be retrained in the new version by representatives of the organization which developed the SIS, the American Association on Intellectual and Developmental Disabilities (AAIDD).

Gallivan said training also will be offered to family members and representatives of service provider agencies, who attend the interviews and help answer questions.

The state will monitor the new approach to determine whether it leads to a reduction of a high number of exceptions now granted to the assessment results. 

The exceptions, in which a client may have more funding than warranted by the official level of support, have raised numerous questions in the General Assembly about how the Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals (BHDDH) manages its budget. 

Gallivan offered some background on the SIS, which is used in Rhode Island as a basic building block of the developmental disability budget.

On its face, the SIS is a better assessment than some others in use across the country because it frames questions in terms of an individual’s strengths and the supports he or she may need to achieve a particular goal, rather than focusing on deficits, Gallivan said.

But it has its limitations, she readily acknowledged. It is recognized nationwide that the SIS does not address extensive medical needs or behavioral issues, Gallivan said.

“You also have to be sensitive to people who are very independent, but they may get themselves into trouble with the law,” or in some other way, because of their disabilities, she said.  For example, some individuals may appear independent, but if they don’t have the proper support and guidance, they may end up at a homeless shelter, or picked up by police for shoplifting.

The SIS was developed as a tool for planning individualized programs of support, not as a funding mechanism, although many states use it for budgeting, Gallivan said..

As a result of the gaps inherent in the original assessment, the state of Oregon developed a number of questions on behavioral and medical support needs that were tried out by other states and ultimately incorporated into a new version of the questionnaire called the SIS-A, Gallivan said.

“Everyone came to the conclusion that these supplemental questions really did add a more robust, accurate assessment,” she said.

AAIDD released the SIS-A in 2015, according to the organization’s website.

Gallivan said arrangements are being made for AAIDD representatives to come to Rhode Island for training in the SIS-A. At the same time, the consultants who developed the formula for turning SIS scores into individual funding levels have been asked to revise that algorithm to correspond to the SIS-A, she said.

Disability Services: a Lifetime Commitment

Meanwhile, Gallivan has tried to set a different tone for presenting the needs of individuals with developmental disabilities to the state Budget Office. 

“I’m not saying that people don’t know” what the Division of Developmental Disabilities does, “but a lot of people really don’t know,” she said with a chuckle.

“So I think it’s really important to paint a picture” of the service system and the people in the middle of it, Gallivan said.

Budget officials should know who the division serves, whether they live with their families or elsewhere, the kinds of services they receive, why the services are important to them and their families, the actual costs of providing those services, and the expected outcomes, Gallivan said.

That’s a different approach than seeing the system as a list of line items, she said.

It’s important for the fiscal arm of state government to understand that “we are the long-term care system,” Gallivan said.

“People think of the elderly as being the long-term care system, but they’re only in there for a few years,” she said.

“We’re talking birth to 100” in developmental disabilities, she said.

Legislators must understand that they can’t take money from individuals with developmental disabilities and give it to someone else, Gallivan said.

“In this system, everyone who comes through the door will have a life-long need for some kind of support because of the nature of their disability,” she said.

It’s not analogous to the mental health system, where funds may be shifted because one person is in recovery and another is not, Gallivan said.

A Focus on Families

In any presentation she makes, Gallivan said, she tries to emphasize the need to support families who have a member with developmental disabilities living at home with them.

Many families want their loved one at home, she said. "Ffrom a bureaucratic perspective, it’s (generally) the safest place they’ll be,” she said, “and the cost of services in the family home will be less than they will be anywhere else.”

“So how can we invest in families and recognize them as caregivers? We talk about people as caregivers of those with Alzheimer's, but we have people who are caregivers of people with developmental disabilities who face a lot of challenges” and have their own need for support, Gallivan said.

She suggested families should have access to more respite care and should be able to get financial support for modifications like wheelchair ramps.

Gallivan also indicated technology might help families keep tabs on their loved ones, although options like bedroom cameras might not be universally welcome in some homes.

The full range of supports for families “need to become a very strong focus,” Gallivan said, “and the type of planning we need to do with families is very different.”

“You need to talk about the whole family and what the family needs are,” she said.  

Families and individuals who advocate for themselves must be part of the conversation, Gallivan said.

Montanaro Says Rhode Island DD Services Have a Long Way to Go; She Won't Miss the Politics

Photo by Anne Peters 

By Gina Macris

When she became director of Rhode Island’s developmental disability agency in February,  2015,  Maria Montanaro inherited a budget with no relation to actual costs that was destined to run a deficit.

 She had to work with a state­-run system of group homes resistant to change, which she said exists to preserve jobs and not to serve clients.

And she had virtually no high-­level staff to form the leadership team necessary to move forward on compliance with the 2014 federal consent decree that requires Rhode Island to transform its services for adults with disabilities from segregated programs to integrated, community­-based supports.

A little more than a year into the job, as she was trying to reduce costs to hit a budget target that seemed plucked out of thin air, Montanaro realized that working in state government was not for her.

She said Governor Gina Raimondo and the Secretary of Health and Human Services, Elizabeth Roberts, have been very supportive. After favorable state revenue estimates in May, Raimondo added to her budget request for developmental disabilities, and the General Assembly gave her most of what she wanted.

Nevertheless, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) needed everything the governor asked for - a total of $16.9 million in new Medicaid funding, Montanaro said.

In March, Raimondo had asked her to stay on until the budget process was complete, Montanaro said, and she agreed.

In the end, the political aspect of running  BHDDH proved to be ‘very draining,” said Montanaro. Her last day at BHDDH is June 24.

“It takes an enormous amount of effort to move the levers” of state government, she said in a recent interview. Formerly CEO of Magellan Behavioral Healthcare in Iowa and the Thundermist Health Center in Rhode Island, Montanaro had never worked in state government before she came to BHDDH.

In public statements in recent weeks, Montanaro has helped start a new conversation about splitting up BHDDH – a change that could not come without legislation enacted by the General Assembly.

Accustomed to dealing with budgets as professional challenges, Montanaro said she found that trying to get funding in the right places is also a political issue in state government. That was “very difficult for me,” she said.

It was “enormously frustrating,” she said, to inherit a system of fragmented services and balance sheets always running millions of dollars in the red. (The deficit has averaged about $4.6 or $4.7 million for the past eight years.)

 She offered a frank analysis of what’s wrong at BHDDH, and the reasons the Division of Developmental Disabilities should be a separate entity, with its own commissioner, working hand in hand with the state’s Medicaid administrator.

 “Politics aside, there is a responsibility to adequately fund the system,” Montanaro said.

Actually, there are two systems of care in Rhode Island for adults with developmental disabilities, and Montanaro indicated that is one of the problems.

One division of BHDDH operates a network of 25 group homes serving roughly 150 adults with a staff of less than 400 employees. The division is known as Rhode Island Community Living and Supports (RICLAS).

BHDDH also contracts with about two dozen private agencies which, in turn, hire some 4000 workers to serve roughly  3,600 clients day and night, including some 1,120 adults with intellectual challenges who live in about 250 group homes.

Montanaro said the one good thing about the state­-run homes is that employees are paid adequately. Their pay ranges from $15 to $25 an hour. Direct support workers in the private sector make minimum wage or a little higher -  an average of about $11.50 an hour. Burnout is high, and turnover runs an average of about 35 percent, according to testimony presented to the House Finance Committee last month.

 “RICLAS as a provider system needs to make changes, and it’s very hard to enact change with a unionized workforce with very rigid views on change,” she said. “We have a lot of limitations in negotiating those changes. Do we need a state-­run residential system?” Montanaro says she thinks not.

“Why not do that in the private sector; use contracts and incentives in the private sector to make sure we get people what they need,” Montanaro said.

“We should not be running a system to employ people. We should be running a system to serve clients,” Montanaro said.

Services for adults with developmental disabilities are all funded by Medicaid, Montanaro said, and the future costs can be projected fairly accurately by looking at the state’s costs for the past three years.

Montanaro contends that the social support services funded by Medicaid through the Division of Disabilities probably avoid medical costs in the long run. The social supports, like job coaching and other services, “allow them to live their best life, doing meaningful work and having a meaningful personal life,” Montanaro said. People who are more active and engaged in their communities are not as sick, using fewer medical services, Montanaro said.

“That is why I am arguing to change the structure,” she said, She envisioned a separate unit run by a commissioner of developmental disabilities – someone like Charles Moseley, a developmental disability career professional who formerly served as commissioner in Vermont.

Moseley is now the federal court monitor for compliance with the 2014 consent decree which requires Rhode Island to transform its segregated system into an integrated one over a 10-year period in accordance with the 1999 Olmstead decision of the U.S. Supreme Court. That decision clarified the integration mandate of the Americans with Disabilities Act (ADA).

Together, Rhode Island’s developmental disabilities commissioner and the state Medicaid administrator “should have a sight line over the whole experience,” so they are able to see how day supports affects utilization of medical services, Montanaro said.

“It’s pretty easy to look at caseload and utilization and set your budget,” she said. This exercise should be carried out as part of the state’s twice yearly caseload estimating conference, she said. Prior to Governor Raimondo, every administration has set an arbitrary budget target that did not reflective of projected costs, and BHDDH has responded by either lowering rates paid to private providers or running a deficit without worrying about the consequences, Montanaro said.

There’s an assumption in state government that the Division of Developmental Disabilities can lower costs by better managing the utilization of services, she said, but that’s not true.

 “The population is “fairly static,” and the needs of clients are stable, she said. Individuals who meet certain criteria are entitled by law to residential services and employment and other social supports.

The only way to reduce costs is to cut reimbursement rates to providers, which has been done in the past, she said. 

Montanaro said it appears that prior to her arrival, BHDDH may have created bureaucratic delays to save money by delaying the adjudication of appeals.

“We tried to terminate unfair practices,” she said. “We have a responsibility to plan for the service to clients.” In nearly 18 months at BHDDH, Montanaro said, her team “removed those operational barriers that we found in place here."

"Were they in place deliberately, or were they here because the department was wildly inefficient, with eligibility delays and claims lagging as a result? I won’t speculate on that,” she said.

The amount of time and effort necessary to bring about change in the state bureaucracy leads to “a lot of crisis management,” Montanaro said. “It’s designed to protect institutions from constant, fast change that could come with changes in administration every four to eight years,” she said.

In addition to having a realistic budget, Montanaro said the ideal developmental disability agency would be staffed by experts needed to move reforms forward.

As it is, she said, “the Division of Disabilities has lacked critical leaders in critical roles for all the years far back that I can see.”

For about 16 months, Charles Williams, the outgoing director of developmental disabilities, has split his time between that job and running RICLAS. His professional expertise is in mental health services rather than developmental disabilities, Montanaro said.

As a result of the consent decree - and Montanaro's efforts - BHDDH now has a chief transformation officer, Andrew McQuaide, and has just hired Tracey Cunningham of the James L. Maher Center in Newport as an Employment Specialist.

Funding has been authorized for a quality improvement officer to focus on programmatic improvements for BHDDH staff and private service providers. In addition, a high-level chief operations officer will be hired to round out the leadership team.

As for her own future, Montanaro, 58, said she will take the summer off to recharge. She plans to visit her son and daughter-in-law in France, where the couple are expecting their first child.