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

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

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

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

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

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)

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

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 

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.

 

More Money for Developmental Disability Services; Is it Enough to Satisfy the Court?

By Gina Macris

The Rhode Island House Finance Committee’s recommended budget for developmental disabilities could represent a glass half full or a glass half empty. 

Neither description is likely to satisfy the U.S. District Court, which recently issued an order saying, in effect, that the state must provide developmental disabilities programs a full glass.  

The House Finance Committee would give Governor Gina Raimondo most of what she asked for in the next fiscal year, including $5.1 million to raise the pay of direct care workers making poverty wages and another $4.1 million to restructure the way private service providers are reimbursed. 

But the recommended budget also is built on two iffy assumptions – that the developmental disability agency will be able to save $6.4 million in housing costs and that the caseload will remain the same, with about 4,000 people receiving services. Raimondo’s budget asked for a $5.8 million increase for 100 new cases. 

If either assumption misses the mark, there might not be enough money in the budget to shore up the private service providers, putting at risk at least some of a total of $9.1 million set aside for the raises the service providers want and performance-based contracts the state wants in order to restructure the way it reimburses the private agencies and satisfy part of the U.S. District Court order. 

All of the Governor’s request – a total of  $16.9 million in added federal and state Medicaid revenue-  is needed to correct chronic underfunding in the budget of the Department of Behavioral Health, Developmental Disabilities and Hospitals (BHDDH), the department director, Maria Montanaro, told the House Finance Committee in a recent hearing.

 For the last eight fiscal years, including the current one, the bills BHDDH gets from service providers have exceeded budgeted amounts, Montanaro said. 

Raimondo sought to protect wage increases by specifying in her original proposal that $2.5 million of general revenue “shall be expended on private provider Direct Support Staff raises” in the next fiscal year. That sum would be matched by federal Medicaid dollars for a total of $5.1 million that would pay for 45-cent hourly wage increases.

 The protective language around the $2.5 million in state revenue has disappeared from the House Finance Committee’s recommendation. 

With the protective language gone, there could be a replay of the current budget, in which $4 million was originally set aside to boost workers’ pay but never made it into their pockets, going instead to help narrow a hole in the budget. 

Raimondo herself is counting on the first assumption, that BHDDH will save $6.4 million in the next fiscal year by convincing group home residents that they would be happier living with able-bodied housemates in private homes in the community. These are called shared living arrangements. Simply relocating people would run counter to federal law.

The $6.4 million in savings represents a fraction of Raimondo’s original estimate. In February, when she first released her budget for the 2017 fiscal year, she proposed saving $16.6 million by moving 400 group home residents to shared living in 12 months’ time. The House Finance Committee agreed with her subsequent request to restore $10.2 million of that total. 

The prospects of achieving even $6.4 million in savings are not strong if the efforts of the past six months are any indication.  What BHDDH director  Montanaro describes as a “full court press” to increase the number of shared living arrangements in the second half of the current fiscal year has yielded results that are about the same as the first half. There were 11 new shared living arrangements from July to December of 2015 and 10 new placements since January.

The governor’s budget proposal called for $3.5 million in group home savings during the current fiscal year with 100 new shared living arrangements,  but the actual savings will be more like $200,000, Montanaro told the Senate Finance Committee at the end of April.  

The House Finance Committee’s recommended budget acknowledges this development by adding $3.5 million back into to the department’s supplemental appropriation for the current fiscal period, which ends June 30. 

While approving major elements of the governor’s developmental disabilities budget proposal, the House Finance Committee rejected a $5.8-million request to cover an estimated caseload increase of 100 in the coming fiscal year, saying that the developmental disability caseload has been stable at about 4,000. 

Yet there is a backlog of about 240 individuals who have applied for an eligibility determination, according to a BHDDH spokeswoman. Two thirds of them are under the age of 21, according to another BHDDH official. That would mean that roughly 80 are over 21.   

And the numbers of young adults with developmental disabilities who are turning 21 and leaving school - 74 in the current academic year alone – suggest that the caseload should be growing. 

Persons with developmental disabilities between the ages of 14 and 21, who are at risk of segregation as adults, are one of the main concerns of the U.S. Department of Justice in enforcing a 2014 consent decree requiring community-based adult services, with an emphasis on supported employment. 

The consent decree, in effect until Jan. 1, 2024, resulted from a DOJ investigation that found the state’s sheltered workshops and segregated day centers for adults with disabilities violated the integration mandate of the Americans With Disabilities Act (ADA), which was clarified in the 1999 Olmstead decision of the U.S. Supreme Court.. 

In a hearing in April in U.S. District Court, the DOJ presented evidence that BHDDH does not determine eligibility until a few months before an applicant turns 21. 

State law says that persons with developmental or intellectual disabilities are eligible for services when they turn 18. 

Newly eligible young adults and their families often have trouble finding appropriate services, according to the evidence presented in court.  

Many of the two dozen private service providers in the state are not accepting new clients because they say they are operating at a deficit.  Montanaro has confirmed that assertion, telling the House Finance Committee recently that the private agencies have opened their books to BHDDH. 

With the federal court case continuing under terms of a judge’s order, there is likely to be pressure on the state to make sure that all applicants for adult services get timely consideration and an appropriate array of supports, a factor that could push up the caseload numbers. 

In its budget recommendation, the House Finance Committee said it would reconsider its refusal of a caseload increase if the numbers do go up. 

It is possible that decision was at least partly influenced by frustration in the House leadership with a history of poor record-keeping at BHDDH, something that also has worked against the department in the U.S. District Court case. 

The House Finance budget added extensive language requiring BHDDH to report monthly on a variety of statistics, including everything submitted to the court as part of the consent decree requirements. 

After the court experienced delays in getting an accurate count of individuals protected by the consent decree, Judge John J. McConnell issued an order May 18 that requires the state “to create a live database that will allow for efficient and effective tracking of each member of each target population outlined in the Consent Decree and all related and required services and outcomes.” The order then describes all the reporting requirements in extensive detail. 

In all, the order contains 22 requirements, most of them with deadlines in July and August. In the event of a violation of any part of the order, the DOJ or an independent court monitor in the case could ask McConnell for a show-cause hearing as to why the state should not be held in contempt. Fines start at $1,000 a day and max out at a total of $1 million for the year.

The first requirement of the order is that “the State will appropriate the additional money contained in the Governor’s budget for fiscal year 2017 in order to fund compliance with the Consent Decree.” No dollar amount is cited.  

 

 

 

RI House Finance Chairman Asks Whether DD Services Really Need Money; Gets Emphatic Yes in Reply

Maureen Gaynor uses assistive technology to testify before the Rhode Island House Finance Committee May 26. She says people with disabilities want the same thing everyone else does; a job, a role in their communities, and purpose in their lives. To her left is Lisa Rafferty, executive director of Bridges, a disability service provider.

By Gina Macris

Rhode Island’s developmental disability agency needs more revenue in the next fiscal year because it will not come close to saving a target of $16.2 million in group home expenses, the agency’s director, Maria Montanaro, told the House Finance Committee in a hearing May 26.

Montanaro emphasized that after eight years of cost-cutting in the developmental disability budget, the state now needs to add revenue to ensure that Rhode Island residents who live with intellectual challenges get the Medicaid-funded services to which they are entitled by law.

The Committee chairman, Rep Marvin L. Abney, (D-Newport), wasn’t necessarily convinced by Montanaro’s testimony, asking rhetorically, “Is money really the problem?” 

ABNEY                                          Image by Capitol TV

ABNEY                                          Image by Capitol TV

“We’re going on and on and on and on,” Abney said. “I’ll leave you with this thought. It’s not a question, but we are concerned,  is money really the problem? When we’re talking about efficiencies to the system, is money always the answer to that? You don’t need to respond, but just think of that as a director,” he said.

Montanaro did not reply, but other witnesses did say a lack of money is a key factor in ongoing federal court oversight of the state’s compliance with a two-year-old consent degree in which Rhode Island agreed to bring its disabilities services in line with the Americans With Disabilities At (ADA).

The agreement, with the U.S. Department of Justice, requires the state to enable more persons with disabilities to work in regular jobs, rather than in “sheltered workshops.” The decree also requires the state to help persons with disabilities participate in other community-based activities.

In an order issued May 18, Judge John J. McConnell, Jr. laid out 22 short-term deadlines the state must meet. Missing even one of them could trigger a contempt of court hearing. If the state is found in contempt, the judge would require the state to pay a minimum of $1,000 a day for violations of the consent decree, or as much as $1 million a year.  

The first requirement in McConnell’s order is that “the State will appropriate the additional money contained in the Governor’s budget for fiscal 2017 in order to fund compliance with the Consent Decree.”

The subject of the House Finance Committee’s hearing was Governor Gina Raimondo’s proposed budget amendments for the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH),  for 2016-2017 fiscal year, which begins July 1.

In all, Raimondo has requested $18.7 million in added revenue for developmental disabilities, offset by an accounting shift of $1.8 million in home health aide services from BHDDH to the Executive Office of Health and Human Services.

Also on the table is a proposal for about $6.8 million in additional appropriations in the current fiscal year to address a current budget deficit in developmental disabilities. 

If the General Assembly approves the supplemental appropriation, the bottom line in BHDDH’s Division of Developmental Disabilities would increase from $230.9 million to $237.7 million before June 30. Raimondo’s request for an additional $16.9 million in the coming fiscal year would push the overall disabilities budget up to $254.6 million, with about half that amount coming from state coffers. 

In fiscal 2016-2017, Raimondo seeks to make up $10.2 million of the $16.2 million she originally envisioned saving in reduced group home costs.

The governor also wants an additional $9.2 million in funding to raise salaries for staff who work with adults with intellectual challenges, or $4.1 million more than she asked for in February. 

In addition:

  • $180,000 would be set aside for an ombudsperson to protect the rights of persons with developmental disabilities
  • ·4.4 million would be restored to the BHDDH budget to prevent the inadvertent loss of professional services like occupational and physical therapy for some persons with developmental disabilities.

All the money comes from Medicaid, with a roughly dollar-for-dollar match in federal and state spending.

Montanaro, the BHDDH director, said adequate funding of developmental disabilities in the next budget would prevent BHDDH from running a deficit every year.

The developmental disability caseload, 4,000 to 4200 annually, also should be included in calculations of the state’s semi-annual Revenue and Caseload Estimating Conference to prevent unexpected surprises in the budget, she said. 

Montanaro                                                               Image by Capitol TV

Montanaro                                                               Image by Capitol TV

The twice-yearly conference is a forum for top fiscal advisors to the Governor, the House and the Senate to reach consensus on the state’s revenues and Medicaid caseload expenses for the coming budget year.  

Montanaro said the $9.1 million in raises for direct care workers are necessary to satisfy the consent decree.

Without being able to offer higher pay, the private agencies that provide most of the direct services won’t be able to re-direct their efforts toward supporting their clients in jobs as the consent decree requires, Montanaro explained.

Workers make an average of about $11.50 an hour, often less than the clients they support in jobs in fast food restaurants, according to testimony at the hearing.

BHDDH originally counted on achieving $16.2 million in savings in the next fiscal year by convincing hundreds of group home residents to move into less expensive shared living arrangements with individual families, Montanaro said.

However, that effort has encountered resistance by individuals and families who find safety and security in group home living, she said.

Since BHDDH began what Montanaro described as a “full court press” on shared living at the beginning of this year, 10 group home residents have moved into private homes with host families, according to BHDDH statistics.

There are now 288 adults with developmental disabilities in shared living – an option that has been available for a decade in Rhode Island – and about 1300 persons living in group homes in Rhode Island.

Tobon                                                           Image by Capitol TV 

Tobon                                                           Image by Capitol TV 

When Montanaro originally testified in January about the plan to shift to shared living, it was in the context of closing a projected $6 million deficit in the current fiscal year.

Recalling that testimony, Rep. Carlos E. Tobon, (D-Pawtucket), a Finance Committee member, said he had been “really concerned” about the timetable.

“You had to sit over there and pretty much, not  convince us, but tell us that this is what you were going to do,” Tobon said. “What was your confidence in actually achieving that?”

“I think I was very clear with the committee that it was a very aggressive approach,” Montanaro replied.

“But the problem, Representative, that I want you to understand, is that we are mandated by (state) law to come up with a corrective action plan” to close a budget deficit, she said.

The choice was either to continue the eight-year pattern of cutting benefits or eligibility, while the federal court watched “the crumbling of that system,” Montanaro said, or to try to get savings by encouraging persons with disabilities to move into more integrated living arrangements.

Montanaro described it as a “Sophie’s Choice,” a dramatic allusion to a forced decision being forced to decide between two terrible options.

 “We knew we might have to come back and tell you our actual experience with that,” she said alluding to the fact that the short-term shared living effort has fallen far short of the goal.

 A gradual shift toward shared living is in keeping with a broad, long-range federal mandate to desegregate services for individuals with a variety of disabilities, but it does not address the Rhode Island consent decree, Montanaro said.

 
In the past several months, as the federal court watched BHDDH spending nearly all its efforts to try to save more money instead of working on the employment requirements of the consent decree, Montanaro said, the judge and the court monitor in the case became “very worried.”

The monitor, Charles Moseley, has said that timing is critical.

Unless the state meets certain benchmarks now, Moseley has said in reports to the court, it will not be able to fulfill the long-range requirements of the consent decree, which calls for a ten-year, system-wide shift from segregated to integrated day time supports for adults with developmental disabilities to comply with the ADA. The decree, signed April 8, 2014, expires Jan. 1, 2024. 

Montanaro said that concerns of the monitor and the judge over the state’s emphasis on cost-cutting instead of the consent decree requirements prompted a recent court order that spells out conditions under which Rhode Island could be fined as much as $1 million this year for contempt. 

In her testimony before the House Finance Committee, Montanaro drove home her point.

“The last thing I’ll say about it is that we really can’t afford to direct all of our departmental activity toward an effort that isn’t actually the effort that the consent decree is obligating us to pay the most close attention to, which is the employment issue,” Montanaro said.

“Judge McConnell and the court monitor want to see the state of Rhode Island make the necessary financial investments in transforming the system, and you can’t transform everything at once,” she said, alluding to Moseley’s concerns about timing.

Montanaro continued to explain, but that’s when Abney, the committee chairman, interrupted, asking his rhetorical question: “Is money really the problem?” 

Later in a hearing that lasted nearly two hours, Tom Kane, CEO of a private service agency, and Kevin Nerney, associate director of the Rhode Island Developmental Disabilities Council, each told Abney that “it is about the money.”

Nerney said, “Whether I think it’s about money, or whether anyone else thinks it’s about money, there’s a federal court judge that thinks it’s about money, and the Department of Justice does, as well.”

Kane, CEO of AccessPoint RI, said “The reason the DOJ is here is a money problem,” he said. “We have jobs available for people (with disabilities) waiting to work,” he said, but providers of developmental disability services can’t hire the support staff “to make that happen,” he said.

Of 77 job applicants at AccessPoint RI during the month of April, 35 refused a job offer because of the low pay, Kane said. “They tell me they can make more sitting home collecting” unemployment benefits, he said.

Serpa                                                  Image by RI Capitol TV 

Serpa                                                  Image by RI Capitol TV 

As he has testified at previous State House hearings on the developmental disabilities budget, Kane said private service providers operate at an average loss of about $5,000 a year for each person they employ. 

Rep. Patricia A. Serpa, (D-West Warwick, Coventry and Warwick), asked whether executives of developmental disability agencies have received raises while their workers have been paid low wages in recent years.

Kane said he gave all AccessPoint RI employees a 3 percent raise in January, the first time since 2006. At the start of the 2011-2012 fiscal year, after the General Assembly voted to cut $24 million from the developmental disabilities budget, everyone took a 7.5 percent pay cut, he said.

Donna Martin, executive director of the Community Provider Network of Rhode Island, CPNRI, said all the member agencies that cut pay that year started at the top.

A review of IRS reports from organizations exempt from taxes shows that executives of developmental disability agencies with budgets less than $5 million make 25 percent less than those of other non-profit agencies in Rhode Island, Martin said.

In developmental disability agencies with budgets greater than $5 million, the executives make 30 percent less than those of other non-profit organizations in the state, she said.

Kane, meanwhile, asked the committee to think of the governor’s budget proposal as a “jobs request.”

KanE                                                    ImAge by Capitol TV 

KanE                                                    ImAge by Capitol TV 

Kane submitted a copy of research done by the University of Massachusetts Amherst which indicates that every million dollars invested in disability services in Rhode Island creates a total of 25 jobs. Based on that research, Kane said later, the $9 million Raimondo has requested to raise pay for direct care workers would translate into a total of 225 jobs.

Kane also said the state should “braid” funding from BHDDH with the Office of Rehabilitation Services of the state Department of Human Services (ORS) to fund “employment teams” that would be more effective than the two agencies working separately to try to do the same thing.

That idea came out of recent discussions between state officials and private agencies about a system-wide redesign of services, Kane said.

Bob Cooper, executive secretary of the Governor’s Commission on Disabilities, said he would add the state Department of Labor and Training (DLT) as another “braid” in Kane’s analogy.

Federal rehabilitation dollars channeled through DLT reimburse the state 78 cents for every dollar the state spends; a better deal than the 50-50 match from the Medicaid program, he said.

The federally-funded Disability Employment Initiative, a workforce development demonstration grant run by DLT, “was making a difference” before the grant ended and the program shut down March 30, Cooper said.

If the state is to comply with the consent decree, disability-related job supports involving BHDDH and ORS must be merged with DLT, the state’s primary economic development agency, Cooper said.

 

 

"Mythbusters" Have Fun Delivering Facts About Consent Decree to Audience of Peers

Natalie Bacon, left, and Meghan O'Leary, right, singing "I'm the Boss of Me," with original lyrics set to the tune Folsom Prison by Johnny Cash. In the background, Christopher Pawlyk plays the guitar. 

By Gina Macris

About a dozen adults with developmental disabilities and their helpers combined hard facts and fun as self-styled “Mythbusters” Monday, March 28 to counter rumors and half-truths about the complicated federal consent decree that demands they - and thousands of others - be more fully integrated into their Rhode Island communities.  

The narrated show, put on by the current leadership class of Advocates in Action, played at the Crowne Plaza in Warwick before a crowd of about 200 people, many of whom receive state services, just like some of the presenters. Family members, support staff, and friends also attended.  

The spring statewide meeting, an annual event, offered the students a chance to practice emerging skills in advocating for themselves and others as they wove together videos, music, and live speaking parts. The leadership class, which concludes in June, offers a 10-month learning experience for Rhode islanders with developmental disabilities every year. 

The first myth on the agenda, as explained by Amy Ethier, was that “Department of Justice came to Rhode Island and said that everyone who has a dd (developmental disability) has to work. If we don’t work, we’ll lose our services.”  

That statement is not true, said Andrew Whalen, who works part-time at Advocates in Action.     

According to the consent decree, “those people who want to work will get the support they need to work” in jobs paying at least minimum wage, he said. “People can choose not to work, but it needs to be an informed decision.”  

To make the point that life experience is at the heart of an informed decision, Deb Kney, the administrative director of Advocates in Action, presented  a take-off on the long-running Life cereal television commercial, in which three-year-old “Mikey” finally tries the food that is “supposed to be good for you” after his two friends refuse to take a bite.    

courtesy advocates in action

courtesy advocates in action

In the video, Keith Wilcox takes on the role of “Mikey,” who is flanked by friends egging him on to eat the cereal. The final message, delivered poster-style on a mock cereal box: ” Real Life Tastes Great! Sample Some Today!”  

Though it was emphasized during the presentation, the state does not now have enough resources in place to readily help everyone with a developmental disability who wants to get a job, or to immediately offer real life experiences to everyone who needs to make an informed decision about applying from a waiver from work.  

The way the state will pay for implementing the consent decree is one of the key issues that has been unfolding since January in hearings in U.S. District Court in Providence.  

Another thing the court wants to see is an assurance that services will fit an individual’s needs.  

It’s not one-size-fits-all, the leadership class impressed upon its audience.  

Those receiving services, according to the consent decree, are entitled to an individualized service plan that places each person’s needs, strengths and interests at the heart of planning and delivering services.   

Jim Petrone, who uses a motorized wheelchair and a communication device, demonstrated that point in a pre-recorded video which shows him listening for a minute while several people talk about his likes rather than asking him directly. Then Petrone conspicuously turns up the volume on his communication board and a deep voice booms: “Attention! Excuse me. This is my meeting and I need to talk now.”   

courtesy advocates in action

courtesy advocates in action

At the other extreme,  a video clip dispelled the myth that the mandate for individualized supports includes luxuries. Christopher Pawlyk donned a lei, oversized sunglasses and a flower-topped hat trimmed with halo of fake fur to deliver this line: “Well, this person wants to take an individual vacation to Hawaii two to three times a year.”

Medicaid does not pay for “stuff,” but for the supports and services needed for people to have access to experiences in their communities, the leadership class emphasized.  

The group also busted the myth that Rhode Island is closing all its group homes AND moving everyone into shared living arrangements with individual families.  

Class member Amanda Campbell followed up with the facts. “It is true that the state wants you to become more educated and informed on shared living, but it’s your choice. You have the right to live where you want to live,” she said.  

Advocates In Action invited an expert on shared living, Joanne Malise, to speak on that housing option. She described it as a “mutual choice” involving a family and the individual looking for a place to live.  

“You get to know each other and both people decide to live together,” she said. Malise is director of Living Innovations, an agency that specializes in supporting shared living arrangements.  

For those seeking a different option, financial realities make house-hunting a bit more complicated. Questions from the audience indicated people with developmental disabilities are having a difficult time securing subsidized apartments for which they are eligible.  

People living in group homes who may not be candidates for shared living arrangements may have to move anyway if their home is closed during the state’s shift to shared living.  

Charles Williams, director of Social Services for the Division of Disabilities in the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), said the group homes must give residents 30-days’ notice before a house closes. The agency is obligated to continue to provide support until alternate housing is found, he said.   

While people with developmental disabilities have the right to choose the agency which serves them, the state does not reimburse them for all their costs. That issue is also embedded in the federal court case. Financial constraints have prompted the state’s private providers to refuse new clients, particularly if the individuals have extensive, costly needs.