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 Speaker: General Assembly Likely To Reverse $18 M Cut In DD Services Proposed By Governor

By Gina Macris 

It is likely the General Assembly will restore about $18 million in proposed cuts to private providers of developmental disability services in the budget cycle that begins July 1,” Rhode Island House Speaker Nicholas A. Mattiello said May 10.

In a video interview published by GoLocal Prov, Mattiello said:

“We have about $18 million in proposed cuts to the developmentally disabled community. I don’t want to speak for everybody, but I’m certainly going to strongly advocate for giving the money back and restoring it. I don’t think that’s an appropriate place to go for your cuts. And we were always planning on restoring those funds. I think that thinking is pretty universal.”

Mattiello was interviewed at the conclusion of the May Revenue Estimating Conference, which indicated revenues are running about $130 million to $135 million ahead of estimates for the current fiscal year and the next one, according to slightly differing preliminary news reports.  An official statement was not immediately available.

A spokesman for Mattiello added that the “budget will be finalized in the coming weeks, and there are no firm numbers yet, but the Speaker is committed to addressing the developmental disabilities issue in the budget.”

The chairman of the Senate Finance Committee, Sen. William J. Conley,Jr., D-East Providence and Pawtucket, has taken a firm stand against the $18 million reduction in reimbursements to private providers proposed by Governor Gina Raimondo in January.

During a Senate Finance Committee hearing May 3, Conley framed the budgetary issue in terms of the civil rights of adults with developmental disabilities to have the assistance they need to enjoy services in their communities as spelled out in the Olmstead decision of the U.S. Supreme Court.

And that day for the first time, Rebecca Boss, director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals(BHDDH), acknowledged that governor’s recommended budget for the fiscal year beginning July 1 would not allow the state to continue its compliance efforts with a 2014 federal consent decree based on the Olmstead decision.

For the fiscal year beginning July 1, Raimondo has proposed $250.8 million for developmental disabilities. That figure is $6.1 million less than the bottom line enacted by the General Assembly for the current fiscal year and a total of $21.4 million less than current spending levels.  Raimondo’s budget proposal would raise the current spending limit from $256.9 million to $272.2 million for the fiscal year ending June 30 to cover a cost overrun, treating it as a one-time event.  

In the BHDDH budget request to the governor last fall, Boss asked for a total of $278.8 million for developmental disabilities beginning July 1.

U.S. District Court Judge John J. McConnell, Jr., who presides over implementation of the consent decree, has made it clear over the last six months that he has a keen interest in the funding issue.

At the most court recent hearing April 10, an independent court monitor said he would draft recommendations for a proposed court order to ensure compliance with the consent decree

The monitor, Charles Moseley, was to first consult with the state and the U.S. Department of Justice to see if they could all reach consensus on the recommendations. Moseley’s report to the judge has not yet appeared in the court file.

But McConnell has received a letter from a parent asking him to “stop the governor’s plan to cut $18 million from I/DD (intellectual and developmental disabilities) services.”

Chris Torgovec has a son with autism who is living in a group home and has started to work a few hours a week “so he is doing well there, but I’m afraid of what could happen if these services would go away.

“It would not be a good thing for anyone. I’m sure there are other places to make cuts but not to people that actually need help, “ Torgovec said.

RI Senate Finance, BHDDH To Seek More Funding To Protect Services And Rights Of Adults with DD

By Gina Macris

Governor Gina Raimondo’s proposed $18.4 million cut to developmental disability services for the next fiscal year would not allow Rhode Island to continue its compliance efforts in connection with a 2014 federal consent decree, Rebecca Boss acknowledged for the first time during a budget hearing before the Senate Finance Committee on May 3.  

Boss - RI CApitol tv

Boss is the highest ranking official in the Raimondo administration responsible for adults with developmental disabilities in her position as the director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).  

Her admission came in response to the finance committee chairman, Sen. William J. Conley, Jr., who laid out a detailed and persistent line of questioning that revealed an authoritative grasp of the issues of the the consent decree and established him as a leading advocate for expanding the developmental disabilities budget.  

Boss said in initial remarks that based on an “updated data analysis of monthly caseloads and more positive revenue trends, we will be advocating for increased funding for BHDDH so Rhode Islanders’ needs are met.”

Conley - RI CAPITOL TV 

But Conley asked her to revisit a specific question about funding that had first been posed to her by U.S. District Court Judge John J. McConnell, Jr. during a hearing April 10. McConnell asked whether the proposed $18.4 million cut in reimbursements to private providers effective July 1 would affect the state’s ability to move forward with compliance efforts related to the consent decree.

At the time, Boss said BHDDH did not have enough data to give an answer.

Conley said the consent decree “does nothing more, quite frankly, than require the same standards that the U.S. Supreme Court established in 1999.”

The so-called Olmstead decision clarified the integration mandate of the Americans With Disabilities Act, spelling out the rights of all individuals with disabilities to choose services that are part of their communities.    

Nearly 20 years after the Olmstead decision, Rhode Island is “still struggling to meet a constitutional standard of care,” Conley said.

“Four years after the consent decree was entered and after repeated court monitor reports, we still cannot answer the question as to whether or not we are providing sufficient resources, really, to provide justice and dignity to the people with intellectual and developmental disabilities in the state of Rhode Island.”

“While I understand you have to represent the voice of the administration, and everybody expects you to be a loyal soldier and team player, the budget that you are giving us doesn’t do that,” Conley said, addressing Boss.

Otherwise, Boss would have been able to clearly answer the judge that the loss of $18 million would not affect progress on the consent decree and would have been able to spell out how its goals would be achieved with the remaining funds, Conley said.

When Conley asked what the Senate Finance Committee could do to help BHDDH, Boss and the Director of Developmental Disabilities, Kerri Zanchi, both said members could advocate for more flexibility for the department to assign resources.

Boss said she agreed that the department needs more resources but wasn’t sure that the prescriptive nature of the consent decree was the best approach.

But Conley replied said that when the state isn’t meeting the standards, or doesn’t have the data to show its progress – a problem since 2014 – “the default position is prescriptive standards, because they need some kind of measuring stick.”

One measure is whether the “proposed budget would provide the level of services that are constitutionally mandated,” Conley said.

“What’s your answer today?” he asked, bringing the discussion full circle back to the judge’s question.  

Boss said, “With the revised analytics done, we could say today that the budget proposed would not continue the service delivery” in the current fiscal year.  The consent decree requires an increase in commitment during each year of implementation. equired by the consent decree.

While Boss did not offer a figure, Sen. Louis D. DiPalma, D-Middletown, the first vice-chairman of the committee, said developmental disabilities would need about $275 million to $280 million in federal and state funding during the next fiscal year, based on the original budget request the department made to the Governor’s office last fall.

DiPalma presented a chart showing that actual funding for developmental disabilities has lagged behind inflation since July 1, 2011, which marked the introduction of “Project Sustainability,” the current fee-for service reimbursement system that has come under increasing criticism for imposing restrictions on providers – and the state bureaucracy – in implementing the consent decree.

For example, the chart shows that the $239.8 million allocated for developmental disabilities effective July 1, 2010 would be the equivalent of $274.5 million allocated effective July 1, 2018, the start of the next fiscal year, with an adjustment for inflation according to the consumer price index.

Raimondo’s proposal, as it now stands, would allocate only $248.1 million effective July 1, counting only the federal-state Medicaid funding. (Other miscellaneous funds would add slightly more than $2 million to the bottom line.)

The Senate on May 1 gave final approval to a resolution creating a special commission to study the reimbursement system under Project Sustainability, including the use of a standardized assessment tool keyed to a funding formula that has never been disclosed. The commission has until March 1, 2019 to issue its report.

Sen. Walter S. Felag, Jr., D-Warren, Bristol and Tiverton, said he favors fully funding developmental disabilities.

He said it seems that in the last eight to ten years, there has been “tremendous pressure” to decrease these expenditures,” with particular challenges on residential costs from 2013 to 2017 as BHDDH has tried to move people out of group homes to less expensive shared living arrangements.  He questioned whether it has been all worthwhile.

Boss said there have been investments in developmental disabilities in that time, and Conley remarked that Boss and her staff are doing “tremendous work” with the resources they do have.

Beth Upham put a parent’s perspective on services. Her daughter, Stacy, a resident of a group home with an active calendar, “has a life we never could have given her,” she said.

She said she has met with Governor Raimondo, who has “promised she would support this community.”

But if the governor’s existing budget proposal is enacted, Upham said, “every person in the system will suffer. They will be sicker. There will be more hospitalizations. My daughter, my baby girl, will suffer,” Upham said.

“We have been fighting this system ever since she turned 21,” Upham said.

She asked, “why, for the last 15 years, has this community been targeted for cuts?”

RI Senate Poised To Launch Study of The Way State Reimburses Private Providers of DD Services

By Gina Macris

A proposal for a special commission to study Rhode Island’s fee-for-service reimbursement system for private providers of developmental disability services appears headed for approval on the Rhode Island Senate floor May 1.

The 19-member Senate commission, including representatives of state government, service providers, advocates and the public, would report its findings by March 1, 2019, in time for any recommended legislation to be enacted during next year’s session of the General Assembly.

The  Senate’s Committee on Health and Human Services recommended passage of a resolution creating the commission on a unanimous vote April 24.

The current reimbursement system, called “Project Sustainability,” has been in effect for nearly seven years, which means that there is plenty of data available for analysis, according to Sen. Louis DiPalma, D-Middletown, the principal sponsor of the resolution.

“The goal of 'Project Sustainability' was to bring predictability, efficiency and transparency to the way in which the state pays for the developmentally disabled,” according to the resolution.

But DiPalma said that “we’ve seen some challenges” in Project Sustainability, like a requirement that providers document daytime services in 15-minute increments. That feature has been assailed by service agencies as overly burdensome and costly.

“We have to take a look back and see what worked, what hasn’t worked, and what changes are needed going forward,” DiPalma said.

DiPalma, the Senate’s most vocal advocate for adults with developmental disabilities, is expected to be among three legislators on the 19-member commission to be appointed by the Senate President. 

He said its recommendations would not sit on the shelf. “I don’t do anything for the sake of doing it. I’m about doing the analysis and getting the job done,”  said DiPalma.

In addition, “the members of the commission won’t let it happen,” he said. There will be “joint accountability” for what happens, inside and outside the General Assembly, DiPalma said. 

The membership of the commission would include representation from the Rhode Island Developmental Disabilities Council and a parent group, Rhode Island Families Organized For Reform Change And Empowerment (RI FORCE), as well as the Rhode Island Disability Law Center. Human services officials from the executive branch of government would include the director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and several other representatives of BHDDH and the Executive Office of Health and Human Services.  

The commission would convene at a time of renewed parent advocacy and heightened scrutiny of developmental disability funding by the U.S. District Court in the wake of Governor Gina Raimondo's plans to cut $18.4 million from reimbursements to private providers beginning July 1.

In a 2014 consent decree with the U.S. Department of Justice, the state pledged to move from segregated sheltered workshops and non-work day services to an integrated, community-based system to comply with the Americans With Disabilities Act. 

In the most recent court hearing April 10, providers warned Judge John J. McConnell, Jr. that they would not be able to continue consent decree compliance efforts if the state enacts Raimondo's proposed budget cuts. d

McConnell is expected to consider taking action on the basis of recommendations from an independent monitor in the case sometime before the General Assembly finalizes the next budget. The monitor, Charles Moseley, was to seek consensus from state officials and service providers before submitting his report to McConnell.

If no agreement can be reached, McConnell has said, he is prepared to hear evidence and arguments before deciding on a course of action. 

DiPalma: RI Must Invest In Transformation of DD Services To Protect Most Vulnerable

By Louis P. DiPalma

The Rhode Island Division of Developmental Disabilities (DDD) in the Department of Behavioral Health, Developmental Disabilities, and Hospitals (BHDDH) is undergoing a significant transformation, much like Department of Children, Youth and Families. This transformation requires financial investment to succeed, not the proposed cuts.

As legislators, we must work to ensure we invest in the most vulnerable populations in our state, including the more than 4,000 individuals living with intellectual/ developmental disabilities (I/DD) who are served by BHDDH-DDD.

From a programs perspective, there are at least two critical elements of transformation the agency is undertaking. The first element is required by the 10-year 2014 consent decree settlement with the Department of Justice for violation of the civil rights of individuals with I/DD. The state, currently in its fourth year of transformation, is now under a court order.

The key focus of this transformational initiative is to transition individuals with I/DD from working in sheltered workshops to integrated employment and community-based programming. And, while the state is making progress in many areas, there is still a need for increased focus and attention.

When all is said and done, in 2024, successfully achieving the goals of the Consent Decree will require approximately $25 million in annual state and federal funding. The Department of Justice is closely monitoring our investments and commitment to reforming our practices toward full inclusion of individuals with disabilities in local communities and businesses. We must invest and commit to the ideals of inclusion for individuals with I/DD.

Another critical element of transformation is the transition of individuals with I/DD from living in group homes to alternative living arrangements, such as shared living arrangements. This transformational, voluntary program, when fully implemented, will require less funding than what is currently needed to support the same individuals in group homes.

The state is making progress in ensuring new DD clients who enter the system have the opportunity to live independently with supports, though challenges remain. During this multi-year transition, the agency will be required to sustain and maintain both systems, necessitating additional investment for multiple years, including in additional personnel. Without it, the transition will not be successful, individuals will not be in the most appropriate settings, and the savings would be unrealized.

Gov. Gina Raimondo has committed to new leadership for BHDDH and DDD to lead this transformation, and progress is being made. However, we are at a point in the transformation that requires investment in the division and the services they fund.

A review of the proposed budgets for the BHDDH-DDD, shows a revised current year budget, including general revenue and federal funding, of $269 million and the proposed fiscal year 2019 budget of $248 million, a reduction of $21 million.

A $21 million reduction in funding at a time when investments are needed. As a legislator, I appreciate the challenge the governor is confronting, especially in light of our structural deficit. Any increases in revenues should be invested in Rhode Island’s most vulnerable citizens, including individuals living with I/DD. It is the right thing to do, and it will help continue progress toward system transformation and compliance with the consent decree.

President Franklin D. Roosevelt said it best: “The test of our progress is not whether we add more to the abundance of those who have much; it is whether we provide enough for those who have little.”

Louis P. DiPalma, a Rhode Island state senator, is a Democrat serving Newport, Middletown, Little Compton, and Tiverton

RI Consent Decree Monitor Will Draw Up Proposed Judicial Order to Ensure Adequate State Funding

By Gina Macris

Judge John J. McConnell, Jr. of U.S. District Court signaled during a hearing April 10 that he is prepared to act to ensure that Rhode Island complies with a requirement of a 2014 consent decree that calls for “timely” funding of integrated services for adults with developmental disabilities.

But it is not yet clear what judicial action might look like in relation to the language of the consent decree, which does not quantify compliance in terms of dollars and cents.

Governor Gina Raimondo has proposed a developmental disabilities budget for the fiscal year beginning July 1 that would cut $18.4 million in federal and state Medicaid funds from current spending limits on privately-operated developmental disability services for adults and another $3 million from a state-operated network of group homes.  

That reduction comes on the heels of an already-underfunded system of services and would “permanently derail compliance with the consent decree,” said Jeffrey Kasle, lawyer for nine service providers, who spoke during the informal hearing, or “status conference” at the invitation of an independent court monitor.

The monitor, Charles Moseley, said he would  draw up a list of proposed funding-related actions for the judge to consider. Marc DeSisto, the state’s lawyer, and Victoria Thomas, who represented the U.S. Department of Justice, each said they wanted to review the proposal before the judge takes action.

If there is no consensus, McConnell said, he will hold a formal hearing and take evidence before issuing an order.

Since 2016, when he began reviewing the consent decree, McConnell has tried to make information about compliance accessible to the public, insisting that periodic conferences be held in open court and stressing the informality of the proceedings.

The review on April 10 was no exception, as the lawyers and state officials spoke from a podium facing the audience in the towering, mahogany-paneled courtroom, so spectators could better hear the proceedings. McConnell, wearing business clothes instead of his judicial robes, sat near the court stenographer just inside a circular bar that normally separates litigants from the public. 

The informal atmosphere, however, belied the gravity of the funding issue, which McConnell called the “elephant in the room,” and its implications for judicial action.

The monitor, Moseley, and lawyers for the DOJ and the providers all concurred in their concerns over funding. 

Officials of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said they needed better data to make a case for a bigger budget and noted that $116 million more will have been spent on developmental disabilities during the Raimondo administration,  between 2015 and 2019, than was spent from 2010 to 2014.

It was in 2014 that Rhode Island was found in violation of the integration mandate of the Americans With Disabilities Act (ADA) by relying on a segregated system of work and non-work activities that could survive on significantly less staffing that is mandated today through the consent decree.

Kasle, the providers’ lawyer, noted that the current administration at BHDDH, led by department director Rebecca Boss and the director of the Division of Developmental Disabilities, Kerri Zanchi, have shown a commitment to collaborating with providers that is the “best in a decade.”

But much of the state’s current compliance with the consent decree occurs because the private providers are doing the work, Kasle said.

“If all they can do is keep people safe,” he said, consent decree compliance will “fall apart.”

A decade ago, direct care workers made $3 to $5 more an hour than minimum wage, Kasle said. The legislative efforts to raise wages in the last two years, which added $11 million to the budget, are appreciated but they have just kept the workers on a par with the minimum wage, he said

For providers,  who can pay only $11 or $12 an hour, “it’s almost impossible to fill jobs,” Kasle said.

And if the state is to integrate individuals with developmental disabilities in the community, allowing them a choice in how their programming will be achieved, the state will need more direct care workers, he said.

Victoria Thomas, a lawyer for the DOJ, said that on the most recent site visit in February, she and her colleagues spoke to a provider who had had to lay off several middle managers because of budgetary constraints.

Employees have seen their salaries cut; paid vacation was eliminated, and workers have had to increase their contributions to health care, Thomas said.

The judge, meanwhile, asked Boss, the BHDDH director, whether the state can comply with the consent decree if Governor Raimondo’s budget for the next fiscal year is enacted without any changes.

Boss said she didn’t know the answer. Nor could she say whether BHDDH could comply with the consent decree if no cuts were made and current spending was maintained. 

Boss said BHDDH is “committed to implementing the consent decree. We want every individual to live in the community as they wish.”

Last fall, Boss submitted her department's budget request for the fiscal year beginning July 1 far higher than what Governor Raimondo later proposed to the legislature.  Boss asked for a total of $278.8 million in federal and state funds, or $28 million more than what Raimondo ultimately submitted to the General Assembly.

In a cover letter, Boss wrote at the time that “any further reductions could have further significant repercussions financially and operationally for the department further impacting some of the most vulnerable citizens within our state.”

For the fiscal year beginning July 1, Raimondo has proposed $250.8 million for developmental disabilities, which is $6.1 million less than the bottom line enacted by the General Assembly for the current fiscal year.

The proposal of $250.8 million is also $21.4 million less than current spending levels. Because of current cost overruns, Raimondo has proposed adding $15.3 million to the existing budget of $256.9 million, for a total of $272.2 million, to fill the budget gap through the end of the fiscal year June 30.

RI DD Providers Seek To Present Evidence Of Underfunding In Federal Consent Decree Case

By Gina Macris

Chronic underfunding already has “significantly crippled the developmental disability system” in Rhode Island, and now Governor Gina Raimondo’s proposed budget threatens to further derail reform efforts,  according to eight private providers of services to people with disabilities.

The providers’ statements appear in an April 6 filing with U.S. District Court in which they seek to intervene and present evidence in the court’s ongoing oversight of the 2014 consent decree designed to correct the state’s violations of the Americans With Disabilities Act (ADA).

Their warning of a potential retrenchment in services mirrors a separate statement of the court’s official independent monitor, Charles Moseley, also filed April 6. In a quarterly report, Moseley says that Raimondo’s $21.4 million proposed reduction would “significantly impact” the state’s efforts to comply with the consent decree.

In filing a formal request to intervene in the ongoing consent decree case, the providers’ lawyer, Jeffrey Kasle, asks to address Judge John J. McConnell Jr. at the next consent decree hearing Tuesday, April 10.

The providers – Community Living of Rhode Island, AccessPoint RI, Gateways To Change, Seven Hills, Looking Upwards, The Frank Olean Center, the Fogarty Center, West Bay Residential Services, and United Cerebral Palsy of Rhode Island – say they won’t be able to continue implementing the consent decree’s mandate for integration of services in the community if the General Assembly adopts Raimondo’s spending plan.

The monitor, Moseley, also said that a previously-announced $3 million reduction in federal funding to the state Office of Rehabilitation Services (ORS) doesn’t appear to affect 30 individuals protected by the consent decree whose names appear on an ORS waiting list for services, because they are getting fast-tracked for similar help at the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Those are the same supported employment services the eight providers say are in peril should Raimondo’s proposed budget be approved by the General Assembly.

The monitor, meanwhile, acknowledged that the $3 million reduction in available funds at ORS, combined with a $21.4 million decrease in funding from current levels, would “seriously erode” the state’s compliance efforts if the budget is enacted as proposed. 

The $21.4 million Moseley cited is the difference between Raimondo’s proposed amended budget for the current fiscal year - $272.2 million in federal and state funding - and her proposed spending limit for the next budget - $250.8 million.

The next budget’s proposed $250.8 million is also $6.1 million less than the $256.9 million the General Assembly has already enacted for the budget cycle ending June 30. After cost-saving measures at BHDDH are taken into account, developmental disabilities is still running a deficit of $15.3 million, which Raimondo would cover with a one-time boost in funds through June 30.

That one-time infusion does not acknowledge the structural underfunding of developmental disability services, according to Tom Kane, CEO of AccessPoint RI, one of the eight agencies that seek to participate in the consent decree case. Kane testified at a recent budget hearing in the Rhode Island House.

Consent Decree Requires Adequate Funding

In his report, Moseley said the Consent Decree requires the state to “timely fund” the services and supports necessary for compliance. He promised to closely follow the General Assembly budgeting process and to keep the judge and the U.S. Department of Justice informed.

Moseley also recalled that Rebecca Boss, the BHDDH director, offered assurances at a public forum Feb. 26 that BHDDH and the Executive Office of Health and Human Services are “committed to ensuring that funding for DD services would meet the needs of the individuals receiving support and that the State has no intention to cut services or reduce rates to service providers.”

“These assurances will be closely monitored in the weeks ahead,” Moseley wrote.

As in previous reports, Moseley documented the extent to which the state has met numerical targets for supported employment and related activities.

But his April 6 report also reflects a sharpened scrutiny of systemic challenges in the overall goal of the consent decree to transform Rhode Island’s services from an overreliance on sheltered workshops and segregated care to an integrated model based in the community that would comply with the ADA.

Some of the issues highlighted by the monitor can be linked to a lack of funding, or difficulties providers have in accessing the money they have been authorized to spend. They include:

• providers’ wariness about taking financial risks to provide the extra staff necessary to integrate clients in the community for non-work activities
• lagging efforts to develop a critically-needed quality improvement unit within the Division of Developmental Disabilities (DDD) to ensure that provider services meet standards of the consent decree

• a lack of reliable data on providers’ ability – or inability - to serve new clients.

Report Tracks Employment

Among the majority of the consent decree population that was already receiving some sort of service when the consent decree was signed, the state has consistently met or exceeded relatively modest employment targets, although the consent decree requires the pace of job placements to pick up in the future.

Job placements have lagged for young adults – those seeking BHDDH-funded services for the first time – even though they have tended to have a more integrated education than prior generations and might be perceived as better prepared than their predecessors to take advantage of employment opportunities in the community.

The court has approved a revised schedule for the state to achieve employment targets for the so-called “youth exit” population - those who left high school between 2013 and 2016 – and Moseley said the state has met the first goal of the new compliance timeline.

He included a table, below,  which shows the cumulative number job placements the state has achieved among three categories of the consent decree population. 

Monitor's report, U.S. District Court File 

Besides Youth Exit, the categories include “Day Target” for those based at segregated facilities during the day and “Sheltered Workshop” for those who worked for sub-minimum wage at repetitive tasks. 

The entire consent decree population, including teenagers, numbers just over 4,000 individuals,  Moseley said, noting that it fluctuates from quarter to quarter. For a variety of reasons, the number that must be offered supported employment in the community is 2,418, Moseley said. Individuals have the right to refuse.

With the implementation in 2017 of a supported employment program that includes performance payments for service providers, BHDDH has made notable gains in expanding job placements, Moseley said.

His report included links to videos documenting the impact of meaningful work on adults facing intellectual challenges. https://vimeo.com/81024947 and https://www.youtube.com/watch?v=PBcfHqLB2QU&feature=youtu.be

Off the Job, Community Integration Lags

When it comes to integrating adults with developmental disabilities in the community for non-work activities – another main goal of the consent decree – service providers generally have a long way to go.

Moseley described a common scenario:

“Typically, individuals take part in a relatively narrow range of activities that are selected from pre-set lists or menus that vary by the day, week or month. Although these activities take place in the community in the presence of individuals without disabilities, they generally are non-participatory; people attend a community event, visit the zoo, walk through or have lunch in a park, go to a restaurant for coffee, spend time in the local library or in stores in the mall.

“These visits may improve individuals’ knowledge of community options, but they do not expand the person’s social network or engage the individual in a meaningful and productive involvement with people without disabilities.” disabilities,” the report said.

Moseley said it is important to note that several agencies do provide “productive and integrated day supports that do meet Consent Decree requirements.”

According to Moseley’s report, these providers tend to “offer day services only in integrated settings and have taken steps to ensure that individuals receiving support are fully engaged in decisions regarding the activities that they will participate in during the day.”

Moseley continued: “Some individuals are living self-determined lives and, with support from staff when needed, are volunteering in local agencies or joining community organizations. Many engage in both individual and group activities of their own choosing over the course of the week and are supported in determining what it is that they do every day and what role the service provider will play in their lives.”

The monitor said that most agencies need concentrated training, technical assistance and oversight, just as they have received for supported employment. Funding is also an issue, he said.

Funding authorizations are issued quarterly on the basis of a standardized assessment of need that may not match up with a particular person’s preferences, an important distinction since personal choice is a fundamental principle of the consent decree.

Several providers have reported that they hesitate to deviate from facility-based care because of billing and reimbursement rules that make it virtually impossible for them to estimate future expenditures and revenues. Staffing group activities in one place is inherently less costly than sending direct care workers into the community with individuals or small groups of clients.

Providers must bill for daytime services in 15-minute increments. If clients do not attend a program on any given day or portion of the day, the providers cannot be reimbursed, even though they must still pay the same labor costs.

Providers have been saying for years that they want an annual, predictable method of funding so they can manage their costs over time.

Moseley called on BHDDH to analyze the current funding model with an eye toward changes that would release providers from regulatory restrictions that hinder meaningful community integration for non-work activities, in the same way that funding methods were adjusted for the performance-based supported employment program.  Meanwhile, BHDDH recently solicited opinions from service providers on how to shape such an initiative, although the project is still at an early stage.

Moseley recommended that BHDDH identify and publicize the promising practices of local provider agencies that do integration well and that it start a pilot program of integrated non-work services for those who are served in the performance-based supported employment program.

What Happens When Families Request Services?  

In broad terms, the consent decree requires the state to ensure that it “supports and maintains sufficient capacity,” through some three dozen licensed provider agencies, to deliver supported employment and integrated non-work activities, in accordance with standards spelled out in the agreement.

While the state has made some progress addressing certain policy and practices within BHDDH as they affect providers, Moseley said, it has not developed a system for regularly collecting data on providers’ ability to respond to requests from consumers. 

At the same time, Moseley has had plenty of reports from families and advocates. He said:

“Many provider agencies turn down individuals’ applications for services or are unable to respond in a timely manner, citing barriers related to insufficient funding, inability to serve individuals with complex or challenging conditions, workforce shortages – inability of the provider agency to train and maintain needed staff – internal limitations on the size of the organization or the number of individuals served, or other reasons.”

In general, providers have said they are loathe to expand services because they are just taking on more operating debt.

While BHDDH has gathered information from its own social workers on providers’ responses to client inquiries, Moseley said that for a number of legitimate reasons, the data is largely incomplete and unreliable.

In the past, BHDDH has discouraged providers from keeping contact information for those individuals they turn away out of concern that the names might be perceived as a waiting list, according to sources knowledgeable about the process.

Moseley directed the DDD to work with providers to develop a system for gathering data for a quarterly report on the number of referrals received, those accepted and those refused and the reasons for the refusals.

BHDDH Needs To Monitor Program Quality

Funding issues also figure in halting efforts of BHDDH to create a quality improvement unit that would ensure high program standards in accordance with the consent decree. BHDDH has an investigatory arm designed to respond only to complaints of abuse or neglect of its clients.

Moseley said insufficient staffing is a “major barrier” in developing a quality improvement unit. 

DDD was to have a minimum of two staffers working fulltime on quality improvement this year but has dedicated only one person to that job, Mosely said, with part-time assistance from two others loaned from elsewhere in BHDDH and the Executive Office of Human Services. In all DDD has pulled together 1.75 full time equivalent positions to work on quality improvement. 

In addition, DDD submitted a plan for developing quality improvement functions that does not call for a feasibility study on an actual quality improvement unit until June 30, 2019. Moseley said the DDD must have the study completed by Sept. 30.

Quality improvement is of critical importance in implementing the consent decree, Moseley said, explaining that the work and non-work program of each of 38 providers must be reviewed once every two years to ensure the services meet consent decree standards. That schedule requires a minimum of least four fulltime staff, he said. The addition of staff to the state payroll requires approval from the Department of Administration.

Moseley said he “strongly recommended” BHDDH take immediate  to increase quality improvement staffing to that level. He also asked DDD and ORS to take numerous other steps to document quality improvement activities on a regular basis.

The U.S. District Court hearing April 10 is scheduled for 2 p.m. in Courtroom 1 on the third floor of the federal court building on Kennedy Plaza in Providence.

Click to read the monitor's full report. 

Click to read the motion to intervene.

RI DD Advocates Warn Of 'Massive Retrenchment' From Proposed $21.4 Million Spending Reduction

                                                                                                                                                                                                                                                                           All Photos by Anne Peters

Donna Martin, executive director of the Community Provider Network of Rhode Island,  speaks during the Day Of Action, sponsored by the provider network. Standing, l to r, are Rep. Deborah Ruggiero, (D-Jamestown and Middletown); Rep. Dennis M. Canario, (D-Portsmouth, Little Compton and Tiverton), and Rep. Teresa A. Tanzi, (D-Narragansett and South Kingstown.  Seated on the steps below the State House Rotunda are advocates representing the service provider Spurwink RI. 

By Gina Macris

Rhode Island would see a “massive retrenchment” in services for adults with developmental disabilities if Governor Gina Raimondo’s proposed budget is enacted for the next fiscal year, a spokeswoman for providers told members of the House Finance Committee at a hearing March 29.

Pam Goes 

In human terms, Raimondo’s plan to cut $21.4 million from current spending levels would diminish the quality of life for some 4,000 individuals whose care is already undercut by low wages and high turnover among caregivers, said Pam Goes of Warwick, who has two sons with developmental disabilities, including one who cannot express his needs verbally. 

Goes delivered the same message at a “Day of Action” in commemoration of March as Developmental Disability Awareness Month under the State House Rotunda in mid-afternoon as scores of adults with disabilities and their supporters lined the steps leading to the House and Senate.  

State Sen. Louis DiPalma, D-Middletown, told the crowd that “people with developmental disabilities have the ability to lead a full and prosperous life. That’s why I’m here.'

Rep. Teresa Tanzi, D-Narraganset and South Kingstown, said that for the compassionate work they do, the wages of direct care workers are an “injustice.”

Tanzi, who chairs the Human Services Subcommitte of the House Finance Committee, presided over the budget hearing later in the afternoon.

Of the overall $21.4 million reduction from current spending levels in the next fiscal year, $18.4 million would come from private the agencies that provide most of the services and $3 million would be taken from a state-operated system of group homes.

Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), did not mince words when she addressed Tanzi and other members of the House Finance Subcommittee.

She said “there is no way” that service providers will be able continue efforts to comply with new federal Medicaid regulations requiring integrated, community-based services and a 2014 federal consent decree that focuses on competitive employment for adults with developmental disabilities.

Needed Changes Are "Not Going To Happen" 

Compliance with the 2014 consent decree and the new Medicaid regulations, called the Home and Community Based Final Rule, depends on system-wide changes in the manner of care, and “that’s not going to happen” with an $18 million cut to private service providers, Martin said.

Instead, there will be a “tremendous reduction” in services, she said, with agencies forced to prioritize the health and safety individuals in their care. Employment –related services and the services necessary to provide community integration will suffer if the agencies must absorb an $18 million, Martin said. Workers’ hours and wages – which hover slightly above minimum wage – would be cut.

David Reiss, CEO of the Fogarty Center, the largest non-profit service provider in the state, said the agency simply cannot survive if the state imposes the $18.4 million reduction across the board. It represents about a 7 percent cut in spending. 

Reiss said he has closed five group homes in the past year, not because of a lack of demand but because he couldn’t find enough workers to staff them. Staff turnover is about 40 percent, he said. 

The starting wage at the Fogarty Center is $10.50 an hour, he said. Although the General Assembly has raised the pay for direct care workers slightly in the past two years, the minimum wage also has increased. It is now $10.10 and is scheduled to go up again next January to $10.50 an hour. Massachusetts has an $11.00 minimum wage and has agreed to pay direct care workers a minimum of $15 an hour beginning in July.

Raimondo’s budget includes no money for raising the wages of direct care workers this year, although a bill in the legislature would link increases in the minimum wage to raises for front-line staff, according to Martin, the CPNRI director.

High Staff Turnover Worries Parents

Pam Goes, the Warwick mother, discussed the impact of the high staff turnover on her non-verbal son.

“We feel like we are constantly starting over,” she said. Her son Paul needs to trust his caregiver, and that trust comes only with time and continuity of high quality care.

“It’s a difficult job for them to be on top of his moods ,” she said. “You need to get to know him,” she said. Paul will often test new staff to see how much he can get away with, she said, and he can become aggressive.

“I worry that there are so many people in and out of his life,” she said. “I worry that his communication is so limited. I especially worry about what happens when I’m gone,” she said.

“I want to advocate for a sustainable system where people live a good life,” she said. “It’s a lot of stress knowing the situation could become more untenable.”

About four thousand people receive services, she said, and “every family has a story like mine.”

Tom Kane, the CEO of AccessPoint Rhode Island, said Goes reminded him of the best compliment his agency ever received: “The work you did for our son allowed us to be the family we wanted to be."

A Call For More Funding

The budget is “about priorities. It’s about morality, and it’s about people” he said. “It should be about people.”

Kane called on the legislators to approve a proposed $15.3 million budget increase to cover cost overruns in the current fiscal year, as Raimondo has proposed, and then to add another $15 million in the budget cycle beginning July 1 to deal with a structural deficit and allow some growth.

Raimondo’s budget proposal does not acknowledge the structural deficit, he said. Instead her plan only temporarily grants additional funding, only to take it away in the next fiscal year.

The General Assembly approved total spending of $256.9 million for the current fiscal year. Raiimondo’s proposal would increase that figure to to $272.2 million. But in the fiscal year beginning July 1, her bottom line would drop to  $250.8 million. That figure is  $6.1 million less than the enacted budget and $21.4 million less than the temporary budget expansion Raimondo has proposed through June 30.

Kane presented figures which showed Rhode Island spends significantly less on adults with developmental disabilities than neighboring Massachusetts and Rhode Island.

The State of the States in Developmental Disabilities, a research project sponsored by the University of Colorado, tracks residential costs for adults with intellectual challenges. In 2015, the latest year for which data is available, the national average for residents of institutions with 16 or more beds was $256, 400 per person.

• Massachusetts spent $287,434 per person
• Connecticut spent $403,496
• Rhode Island spent nothing in that category. All those who would be in institutions in Massachusetts or Connecticut live in group homes in Rhode Island, Kane pointed out.

The average cost for group homes with six or fewer residents nationwide was $129,233 in 2015, according to the State of the States.

• Massachusetts spent $170,682 per person
• Connecticut spent $172,067 per person
• Rhode Island spent $114,973 per person                                       

Kane said the average per-person cost in Rhode Island is skewed upward by the state-operated system of group homes. According to the House Fiscal Office, the average per-capita cost for 139 residents of the state operated system is $207,251.

In the privately-operated group homes, however, the state spends about $60,000 a year per person, Kane said. Roughly 1200 individuals live in houses run by private agencies like Access Point RI  and the Fogarty Center.

Controversy Continues over Assessment

Kane turned to a discussion of the Supports Intensity Scale, a controversial assessment methodology that uses lengthy interviews to determine the level of services needed by persons with developmental disabilities on a case-by-case basis. It was introduced in 2011, ostensibly to correct “special considerations” for individual clients that state officials said posed a problem because they were driving up costs, Kane said. 

Ironically, he said, the assessment has prompted many more appeals of individual funding than the number of “special considerations” that had been granted previously.

Some people see the assessment as a problem since it was revised in November, 2016, because it has it has led to larger awards, Kane said.  A House fiscal analysis says the new assessment has added $17 million to developmental disability costs in the first 12 months it was used. 

Kane said service providers believe that the results of the original assessment were “manipulated to back into a budget that didn’t accurately reflect the needs of people.”  

The revised assessment, the Supports Intensity Scale – A, is being used “far more appropriately now,” he said.

The House Fiscal Advisor, Linda Haley, noted a “moratorium” in the use of the SIS-A. The director of the agency responsible for developmental disabilities, Rebecca Boss, explained that it was temporary, to allow officials to review their implementation of the revised assessment. 

A total of 46 errors in funding were corrected (see related article) and the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals continues to use the assessment for new entrants and for regularly-scheduled re-evaluations of clients. Boss said.

If an appeal includes documentation of changes in a person’s medical or behavioral needs that are likely to be long term, perhaps as part of the aging process, a client will receive a re-assessment with the SIS-A ahead of schedule, added Kerri Zanchi, Director of the Division of Developmental Disabilities.

Kevin Nerney, a spokesman for the Rhode Island Developmental Disabilities Council, discussed several initiatives that are intended to both improve services in compliance with federal law and cut costs over the long term.

But Rhode Island is not there yet, he said.

“We don’t want to destroy one system (of services) before creating a new one,” Nerney said. “We don’t want to leave people behind based on an arbitrary fiscal goal rather than the needs of people.”

He said he knows that some eligible individuals are unable to find services that fit their needs, alluding to an increase in the number of individuals who are receiving only case management  during the last couple of years. That figure jumped from 451 in 2016 to 643 this year.

“On paper, it may look like savings” for the state, Nerney said, but some of those families “are in crisis.”

'Day Of Action' Planned At RI State House To Raise Disability Awareness - And Alarms About Budget

By Gina Macris

Developmental Disabilities Awareness Month, celebrated across the nation, will come to the Rhode Island State House in a “Day of Action” Thursday, March 29.

Adults who face intellectual challenges in daily living plan to celebrate their accomplishments. But they and their supporters also want to raise an alarm about the damage they say proposed budget cuts will cause to the services they need to live full lives.

The “Day of Action” is aimed at lobbying legislators over what advocates say is a looming crisis. Late in the afternoon, after the House adjourns, a subcommittee of the House Finance Committee is scheduled to hear Governor Gina Raimondo’s budget proposal.

The budget would eliminate $18.4 million in current costs from the private service system that supports most adults with developmental disabilities in Rhode Island, says Donna Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), sponsor of the “Day of Action. “

On Thursday evening, Advocates in Action will host a meeting in Warwick that will feature adults with developmental disabilities encouraging their peers to speak up for their right to individualized services that is embedded in the Americans With Disabilities Act (ADA).  (Read related article here.) 

The individualized  approach is inherently costlier than the congregate care Rhode Island has depended on in the past in sheltered workshops and day centers. 

But the right to individual choice is mandated by the state’s 2014 Olmstead consent decree with the U.S. Department of Justice. And the judge in the case, John J. McConnell, Jr. of U.S. District Court, has signaled from the bench that he will be watching budget deliberations.

Among service providers, some officials say privately that their agencies are teetering on the brink of insolvency as a result of several years of underfunding in which the state has failed to cover their costs and they’ve exhausted any reserves they might have had.

The budget, if enacted, would be “untenable,” said the CEO of one service agency, who asked not to be identified publicly.

Family members say the issue is not just about the service agencies.

David and Marcia Graves, parents of a woman with cerebral palsy, said in a statement that the spending cuts “will put the emotional and physical well-being of our daughter and others in jeopardy.”

A drastically reduced budget would make the difficult job of recruiting and retaining qualified direct care workers impossible, the Graveses said in a statement released by the CPNRI.

Raimondo’s calculations suggest that the governor’s office and the developmental disabilities agency, BHDDH, are not reading from the same page of figures.

Martin, the executive director of CPNRI, put it another way. She said that Raimondo’s budget, like the proposals of governors before her, does not address a structural deficit in developmental disabilities, instead continuing a cycle of chronic underfunding and deficit spending.

Here are the numbers:   

The developmental disabilities budget the General Assembly enacted last summer for the current fiscal year allows $256.9 million in spending.

 Raimondo would raise current spending to $272.2 million – an increase of $15.3 million to cover a cost overrun. 

For the fiscal year beginning July 1, Raimondo would drop the bottom line to $250.8 million. The difference would be $21.4 million, including $18.4 million that would come from private providers and $3 million that would come from state-operated group homes.

Viewed another way, Raimondo’s bottom line of $250.8 million is $6.1 million less than the currently authorized spending level of $256.9 million.

All the money comes from the federal-state Medicaid program, with the federal government providing a little more than 50 cents on the dollar.

Budget officials who briefed reporters on Governor Raimondo’s overall fiscal proposal in January emphasized her efforts to close a projected $200 million deficit in the next fiscal year while promising that Medicaid recipients, including those with developmental disabilities, will not see a reduction in services. 

The Office of Management and Budget (OMB), which advises the governor, was asked how it approached BHDDH spending as it set a target for the next fiscal year.

OMB “makes adjustments based on estimated growth rates in the cost of providing services,” said a spokeswoman, but she acknowledged that those estimates did not take into account the current, actual costs.

The spokeswoman said that OMB worked from the $256.8 million budget enacted last year for the existing budget cycle and incorporated “personnel and entitlement adjustments,” like a slight increase in the federal reimbursement rate for state Medicaid expenditures, as well as “certain trend growth rates.”

From there, OMB applied a 10 percent reduction, as it has across the board for all state agencies, to deal with the state’s overall projected $200 million deficit, she said. (Raimondo still found money for new programs.)

One hurdle faced by BHDDH in presenting its case for funding that it is not represented at a twice-yearly meeting at which officials grapple with trends in Medicaid spending, even though the department's services are entirely funded by the federal-state program. 

In November and May, the State Budget Director meets with the fiscal advisers of the House and Senate in the caseload estimating conference to reach consensus on the latest Medicaid expenses and provide updated information for budget projections. 

The law setting up the caseload estimating confernce excludes both BHDDH and the Department of Children, Youth, and Families (DCYF), another agency funded by Medicaid. Companion bills pending in the House and Senate would require both BHDDH and DCYF to participate. 

The most recent caseload estimating conference was in early November, about three weeks after BHDDH submitted its budget to OMB. 

At the time, BHDDH had about a year’s experience with a revised assessment method that determines the individualized level of service authorized for adults with developmental disabilities. The result was an added $17 million in developmental disability costs, according to a report of the House fiscal staff.

Raimondo’s budget summary suggests that BHDDH has been reviewing the validity of the assessment. But BHDDH director Rebecca Boss said in an interview in January that “it’s probably a misnomer to call it a validation of the SIS-A.” She referred to the acronym for the assessment, called the Supports Intensity Scale –A.

The American Association on Intellectual and Developmental Disabilities, the developer of the instrument, “have a scientifically rigorous study that this is a valid tool,” Boss said.

“For us, it was validation of our implementation of the SIS-A, not necessarily the tool itself. It’s a validation of our implementation, and that’s probably a better way to say it,” she said.

BHDDH found 46 cases in which the assessment resulted in individual authorizations that were higher than warranted. Boss said those authorizations were corrected, and all the social workers who do the assessments were retrained in how and when to ask supplemental questions that might lead to higher funding.

“We’re not planning to discontinue using the SIS-A,” she said. “We are planning to make sure we are using it correctly.”

In other words, the prime driver of higher per-person costs for developmental disability services is not going away.

And it will take several years before all adults with developmental disabilities  - some 3700 receiving services - have all been assessed using the new SIS-A.

From 2011 until November, 2016, BHDDH had been using the predecessor to the SIS-A, which was enmeshed in controversy, with accusations by families and providers that assessors humiliated them and the state manipulated results to artificially depress funding authorizations. 

Successful appeals of individual funding allocations cost the state more and more money until the supplemental payments reached a total of about $23 million in the last fiscal year.

The U.S. Department of Justice has criticized the way the state used the original SIS in findings that led to the 2014 consent decree. Two years later, in May, 2016,  the SIS figured in a multi-faceted compliance order issued by Judge McConnell.

He said state policy must require all assessments to be conducted “in a manner that is consistent with individuals’ support needs, separate and apart from resource allocations.”

Six months later, the state inaugurated the SIS-A. Martin, the CPNRI director, said her membership tells her the SIS-A still poses some challenges to families, but it is far more accurate than the previous version. 

RI Adults With DD To Promote Their Visions Of Personal Fulfillment - And How To Achieve Them

Advocates in Action, which supports adults with developmental disabilities in Rhode Island, will hold its annual statewide meeting Thursday, March 29 to promote self-advocacy. Role models will be leaders-in-training who since last September have been participating in a weekly class, learning step by step how to speak up effectively for themselves and others.  

Here are the critical questions they plan to pose to their peers, in various multi-media presentations: (All graphics courtesy of Advocates in Action) 

The March 29 event, from 7 p.m. to 9 p.m. at the Crowne Plaza Hotel in Warwick, is free to the public. The deadline for the RSVP. originally Monday, March 26, has been extended. Other details below:  

RI Consent Decree Task Force Details Concerns About DD Services In Report To Federal Monitor

By Gina Macris

Many young adults with developmental disabilities in Rhode Island are still not receiving services to which they are entitled in a timely manner. Some are not getting services at all.

These conclusions have emerged as the consensus of the Employment First Task Force (EFTF) concerning Rhode Islanders with intellectual and developmental challenges who are trying to get regular jobs and other integrated services promised by a federal consent decree signed nearly four years ago.

The EFTF grew out of a provision of the 2014 federal consent decree which called for a bridge between the public and state government.  An independent court monitor on the case has made it clear that he expects the EFTF to provide a reality check from the community as the state tries to desegregate its services for adults with developmental disabilities to comply with the Americans With Disabilities Act.

The Task Force, including developmental disability professionals in the private sector, family members and consumers themselves, summarized its observations and recommendations covering the last half of 2017 in a recent progress report to the court monitor, Charles Moseley.

In 2016, under pressure from Moseley, the U.S. Department of Justice, and U.S. District Court Judge John J. McConnell, Jr., the state cleared a backlog of as many as 250 applications for adult services and developed an “eligibility by 17” policy.

The policy is intended to allow families plenty of time to plan a smooth transition for their sons and daughters to move from high school to the adult world. Most special education students eligible for adult services from the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) stay in school until the age of 21.

Nearly a year after the “eligibility by 17” policy was announced, in July, 2017, EFTF members were still hearing comments relayed by special education professionals that some families of students were notified of their eligibility but weren’t told how much money they would be allocated in time to plan individualized and meaningful services.

In response to follow-up questions from Developmental Disability News, a BHDDH spokeswoman said in an email August 3 that the agency, working with the Rhode Island Department of Education, local school districts and the Rhode Island Parent Information Network,  is “able to adhere to (the state’s) ‘eligibility by 17 policy.’ ”

"Logjam Cited In Onset Of Adult Services

 But five days later, Claire Rosenbaum, an EFTF member who works as the adult services coordinator at the Sherlock Center on Disabilities at Rhode Island College, said at a public forum that “there seems to be a logjam” when families are trying to figure out how much money the state has awarded them and what it will buy.

At the time, Kerri Zanchi, director of the Division of Developmental Disabilities, (DDD) said her division aimed to give families a one year to plan before their son or daughter leaves left high school and needs needed adult services.

But Rosenbaum said a year is not long enough. Families may explore their options and settle on a particular agency, only to be told it cannot accept a new client with a particular disability or disabilities, she said.

That scenario is not uncommon. A precarious fiscal landscape has prompted many providers of developmental disability services to limit the number of new clients. 

Often, families turned down by one or more agencies  decide that the only way they can get a customized, high quality program is to organize it themselves and pay individual workers through a designated fiscal agent that handles the budget. Once that decision has been made, the families must begin planning all over again, Rosenbaum said, reiterating her conclusion that a year is not enough.

In December, DDD provided data about "eligibility by 17" that EFTF had requested six months earlier, including:

•  The number of applications and the ages of applicants
•  The number found eligible and the time span between application and eligibility determination
•  The number of newly eligible persons who received an initial needs assessment and the time span between the eligibility determination and the assessment interview
• The number who began receiving adult services and the time span from the completion of the needs assessment

In its report, EFTF said that DDD is “actively charting when and why gaps in the process appear.” 

The “gaps in the process” are not defined in the report. But it said Task Force members and state officials agreed to meet regularly to “determine what issues, if any, exist in this process and how to address these issues.”

Data released by BHDDH in quarterly public forums in November and February shed light on some of the requests that had been made by EFTF; the number of applications, the ages of the applicants, and a breakdown on the proportion found eligible. 

The “eligibility by 17” policy assumes that 16 and 17-year olds are submitting applications to BHDDH for adult services, but the most recent data indicates that the 16 and 17year-old age group accounted for only 11 percent of applications between August, 2016 and February 10, 2018. The lack of applications from younger students suggests that the “eligibility by 17” policy hasn’t been thoroughly communicated to families. (See chart below.) 

At the same time, one table indicates that the proportion of applications from 16 and 17 year-olds has been increasing in the last year.

At the most recent public forum, BHDDH officials also presented information on the proportion of applicants that have been found eligible for services. Of 635 applications received between August, 2016 and Feb. 16, 2018, a total of 595 have been decided, including 264, or 44 percent, that were approved without any additional documentation.

The data indicated that an additional 158, or 27 percent, eventually would be approved once documentation was completed.  

Other Issues Raised By Task Force

The Task Force also expressed concerns about other issues. They include:

• A lengthy needs assessment done for each person eligible for services
• The ramifications of a push for more individualized, or “person-centered” services and the planning that goes into them
• An overall approach, dubbed “conflict-free,” in which planning, funding, and service delivery are handled by separate entities so that the best interests of individuals with developmental disabilities are not compromised. Currently, BHDDH handles funding and assessment and approves individual service plans developed by private agencies or independent developmental disability professionals.

Assessing Individual Needs  

 In November, 2016, the state implemented a revised needs assessment, called the SIS-A  (Supports Intensity Scale - A). The SIS-A had been promoted as more accurate than the previous version, and the Task Force concurred.

“Reports seem to indicate better results,” the report said.

At the same time, the Task Force found “ongoing challenges.”

For example, the Task Force said the SIS-A, developed by the American Association on Intellectual and Developmental Disabilities, was “not intended to be a funding mechanism.” That’s the purpose for which it is used in Rhode Island and many other states.

The Task Force recommended that an independent third party be chosen to provide “better interviews” and eliminate conflicts with funding decisions.

Highly detailed interviews with persons eligible for developmental disability services and their families are at the heart of the SIS-A assessment process. Both the assessment and the individual funding decisions are in the hands of BHDDH.

During the interviews, families are very reluctant to speak in great detail about the “deficits and struggles” of the individual at the center of the assessment process, but they don’t understand that this hesitance may result in lower funding for their loved one, the Task Force said.

“Families don’t understand that the first ten minutes of questions which capture exceptional medical and behavioral issues dictate a substantial difference in funding,” the report said.

The Task Force recommended that community organizations, like Advocates In Action, the Cross Disability Coalition, The Rhode Island Public Information Network, and a new parent advocacy group called  RI-FORCE, offer training to their constituencies on the interview process of the SIS-A.

A Call for True Conflict–Free Planning

The report tackled the challenges of so-called person-centered planning, in which the needs and preferences of an individual drive short-range and long-range career and life goals, regardless of the immediate limitations of program offerings of a particular agency.

 In person-centered planning, these individual needs and preferences also drive budgetary decisions, although it is generally understood that not all the supports needed by a person with developmental disabilities will be provided by paid staff.  

“It is our opinion that implementing real, conflict free person-centered planning could have a greater positive effect on people’s lives than the consent decree itself,” the Task Force wrote.

“While there has been some recent movement on the issue,” according to the report,  Rhode Island has been out of compliance for four years with Medicaid regulations for conflict-free individualized planning and management of services.

The Task Force said individuals with developmental disabilities, their families, and service providers all have shown resistance to the person-centered planning initiative now underway.

Some consumers and their families “view this as an additional layer of bureaucracy, while others would prefer all their dollars go to services rather than planning. Some family members are concerned that they would not be as involved using this process,” the report said.

Service providers, who are paid for planning individualized client programs, fear that they will not be able to meet the individualized needs of clients, particularly with limited funds, high staff turnover, and limited transportation options, according to the report.

There is a concern that “conflict-free” removes the staff who best know the individual from the planning process, the Task Force said.

It also expressed concern that there are no additional funds to provide conflict-free planning, saying that redistributing existing planning funds that now go to private providers “may destabilize already underfunded services.”

While calling for additional funding for person-centered planning, the Task Force also urged a continuation of a series of workshops on “person-centered” thinking and planning that is offered by the Sherlock Center on Disabilities at Rhode Island College to promote better communication on the topic. 

Some of the perceptions about person-centered planning “are based on misunderstandings and the general fear that comes with any change,” according to the report. “Communication on this issue will be extremely important.”

BHDDH is trying to address the issue of funding, both to achieve conflict-free planning and case management and to balance its budget in the next fiscal year.

Governor Gina Raimondo’s budget proposal seeks the General Assembly’s approval to amend the Medicaid State Plan so BHDDH can apply for a Health Home waiver that would provide a 90 percent reimbursement rate for person-centered planning and other specific services for two years. 

The earliest such a Health Home might begin operation, on a pilot basis, would be in January, 2019,  and that might be optimistic, according to Rebecca Boss, the BHDDH director.

Supported Employment At Issue

The Task Force, meanwhile, expressed concern about the overall effectiveness of a pilot program in supported employment that is intended to focus on the individual.

“Task Force members expressed concerns regarding the ‘person-centeredness’ of the program, the training requirements to participate, communications regarding the program, and overall effectiveness,” the report said.

Existing staff-to-client ratios prohibit individualizing job seekers’ daily and weekly schedules, according to the Task Force, although that comment did not refer specifically to the pilot program.  DDD also offers job-related services outside the demonstration program.

The Task Force recommended some of its members meet with state officials regularly to review data and develop strategies to ensure the success of the Person-Centered Supported Employment Performance Program.

OP-ED: Investment In DD Supports Critical To Prevent Harm To Fellow Rhode Islanders

By Linda N. Ward  

In his recent opinion editorial “Protect the most vulnerable in RI,” Senator Louis P. DiPalma rightly observes that “the budget is a policy document first, and a fiscal document second. It is a reflection of our priorities.” Knowing this, one sees a troubling pattern if you analyze the state of Rhode Island’s annual budget for supports to people with intellectual and developmental disabilities (I/DD) over the last decade.

Since the economic crash, many industries funded by our state have seen budgetary recovery or have grown far beyond their pre-2008 levels, and some have increased many times beyond those funding levels.  Budgeting for human services, however, has consistently failed to keep pace with the growth of costs over time.  Were state funding for I/DD (intellectual and developmental disability) supports to have been indexed to the consumer price index (CPI) in 2008, there would be 16% more funding ($34 million) for services than have been budgeted for 2019.

Rhode Islanders with disabilities and their families - our neighbors - are in jeopardy and depend on all of us to ensure that their basic health and safety needs are met. As a result of chronic underfunding the I/DD system has reached a tipping point. We must make critical investments to prevent the harm of thousands of Rhode Islanders and their families. The time to act is now.

Agencies that provide support to people with I/DD have not received an increase to their operating rates for 15 years. The rate of reimbursement to providers has remained the same, while all operating expenses have consistently increased.  In most cases, providers have operated at a loss for years. If we do not reverse this cycle, we will see further deterioration of services, and more people with I/DD will have difficulty accessing the services they need.

Simultaneously, we face a workforce crisis like none we have ever seen before.  A decade ago, our direct support professionals (DSPs), the staff who directly assist people with disabilities, were paid wages that were in most cases $3 - $5 above minimum wage.  Over time, the minimum wage has risen, but reimbursements have stagnated. While legislative efforts to raise DSP wages in 2016 and 2017 were laudable, they simply kept providers on par with that minimum threshold, and DSP wages are mostly at or slightly above minimum wage across RI.  With the continually growing demand for home and community based services, RI faces a particular problem because most agencies are currently unable to hire and maintain enough qualified staff.

The current approach to planning and budgeting for I/DD services in RI is not sustainable. We should not continually budget for less than what we know safe and adequate supports cost, and then make retroactive appropriations every year and claim that we are overspending.  Instead, let’s budget according to the actual needs of Rhode Islanders with I/DD and their families.  The proposed $18 million cut in funding to I/DD services (from current year costs) in the Governor’s proposed budget would cause harm to people with disabilities and their families.  The State of Rhode Island was once in the national forefront of services to people with disabilities. The Governor and legislature championed services for this vulnerable population. This is a critical moment for our state. Rhode Island must move to restore its place in supporting people with disabilities, their families and the thousands who make up the compassionate workforce. 

Linda N. Ward is Executive Director, Opportunities Unlimited, Inc. This commentary was jointly authored and signed by the executive directors of 23 agencies that provide supports to approximately 3,600 people with intellectual disabilities and developmental disabilities and their families, and that employ more than 5,000 Rhode Islanders. 

RI DD Public Forum Raises Questions About Balancing Next Budget; No Firm Path Ahead

 l to r: Tracey Cunningham, Brian Gosselin, Rebecca Boss                                                                                                                                                        Photos By Anne Peters 

By Gina Macris

Rhode Island’s developmental disability agency “has no intention at this time to cut any services” to clients or reduce rates to private service providers, the departmental director told some 30 people gathered for a quarterly public forum at the Pilgrim Senior Center in Warwick Feb. 26.

Rebecca Boss, director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), responded to a question from the audience about the budget proposal of Governor Gina Raimondo, who would slash a total of $21.4 million from developmental disability services, including $18.3 million in reimbursements to private providers.

Greg Mroczek, whose son and daughter both receive services from BHDDH, had asked about the budget in relation to the requirements of a 2014 federal consent decree.

 The Olmstead decree requires Rhode Island to transform its daytime services for adults with developmental disabilities from an over-reliance on sheltered workshops and segregated day programs to a system of integrated supports for employment and non-work activities that comply with the Americans With Disabilities Act.

Boss said that “presenting a balanced budget is a challenge” in any year. But it’s particularly challenging when the state faces a structural deficit of about $200 million in the fiscal year that begins July 1.   

Boss said that the governor, the Executive Office of Health and Human Services, and BHDDH are all committed to making sure that “the funding available to the dd (developmental disabilities) system is going to meet the needs of the individuals that we service.

“We believe we will have the services necessary for compliance with the consent decree,” she said. The consent decree covers daytime work and leisure activities but does not address residential services, the area where BHDDH has put an emphasis on cost-cutting in recent years.

Medicaid May Offer Path Forward  

Later in the meeting, Boss explained that the state is exploring the use of a Medicaid option that could help BHDDH balance its budget. The change, she said, also could achieve the programmatic goal of providing case management and coordination that is “free from funding conflicts and free from provider conflicts.” 

The Medicaid option involves the creation of a Health Home, the federal government’s name for an independent entity that would provide adults with developmental disabilities comprehensive care management, care coordination, health promotion, comprehensive transitional care, individual and family support, and referral to community and support services, Boss said.

For the first two years of operation, the Health Home would be supported with a 90 percent federal Medicaid match for every state dollar spent, Boss explained. For Rhode Island’s current fiscal year, Medicaid reimburses Rhode Island at a rate of 51.34 percent for every state dollar spent. For the fiscal year beginning July 1, the so-called Federal Medical Assistance Percentage (FMAP) will be 52.30.

The 90 percent federal match of the Health Home has the potential to bring in millions more in federal Medicaid dollars, but only for a limited period of time.

Boss described the Health Home approach as a “pretty good opportunity.” She asked Brian Gosselin, Chief Strategic Officer for the Executive Office of Human Services, to speak in greater detail about the Health Home option, but Gosselin demurred. 

Because creating a Health Home for developmental disabilities would involve seeking an amendment to the Rhode Island Medicaid State Plan, BHDDH must seek permission from the General Assembly before filing an application, Boss explained.  The request for that authorization to move forward with an application is in Article 14 of the governor’s proposed budget for the fiscal year beginning July 1.

It would be next January at the earliest that BHDDH could try out a Health Home for developmental disability services, and “that might be optimistic,” Boss said.

RI Experience With 'Health Homes' 

Rhode Island already has three Health Homes, Boss said; one for those with mental illness, another for those with opioid addiction, and a third for children and families, called CEDARR Services.

Having been involved in the planning for two of the three Health Homes,  she said, “I can tell you this is a heavy lift” that involves a complicated application process and fundamental system-wide changes in the state’s approach to coordinating developmental disability services. 

John Susa, who has a son with developmental disabilities and is a member of the Rhode Island Developmental Disabilities Council, relayed what he saw when he participated in the creation of CEDARR, one of the three Health Homes mentioned by Boss.

“I thought it was a great idea,” Susa said. “However, as time has gone on, I’m less certain that it was a good idea. I found a tremendous amount of money spent on case management,” he said; people “going to a lot of meetings, but the end result was a very limited amount of output in terms of the impact on the quality of life.”

Boss said she valued Susa’s perspective. “Whatever happened in CEDARR, we’ll try not to do that,” she said.

At the same time, Boss said “it’s not definite” the state will pursue the Health Home option.

She did not say what else might be done to balance the budget.

One Medicaid Rule At Odds With Need For Care

Renee Doran

Meanwhile, Renee Doran, whose adult daughter has developmental disabilities, said her daughter’s support person stayed with her when she had to go to the emergency room recently but was later denied pay for that day for the very reason that the worker was helping the young woman in the hospital setting and not in the community. 

As it turned out, her daughter was admitted to the hospital and Doran spent four days at her side. But what would have happened if she had been out of state or otherwise unavailable? Doran asked.

Heather Mincey, administrator in the Division of Developmental Disabilities (DDD), said the situation arose because community-based workers are paid from one Medicaid waiver while hospital-based workers are paid from another.

Mincey said the hospitals have the wherewithal to pay a developmental disability worker who must take a client to the emergency room.

And Boss said BHDDH can work with hospitals to let them know what services are needed. She said BHDDH often works with the state Department of Health, which oversees hospitals, and can “leverage that relationship” to make sure there is cooperation between hospitals and developmental disability services.

The public forum covered a gamut of topics, most of them related to the state’s incremental progress in meeting detailed requirements of the consent decree.

Focus on Supported Employment

Among other things, BHDDH announced an information session on employment-related services March 9 that will be tailored to the needs of individuals and families who do not get services from a particular agency but design their own programs.

Of about 3700 individuals receiving developmental disability services from BHDDH, roughly 500 are self-directed. Only about 8 self-directed individuals were able to participate in the first year of a performance-based supported employment program in 2017, according to Tracey Cunningham, the chief employment specialist at DDD.

Cunningham said the performance-based program is trying to attract more clients from the self-directed group in the current program year.

The session on March 9 for self-directed families and individuals will be from 9 to 11 a.m. in Room 126 of Barry Hall, 14 Harrington Rd., Cranston.

Anyone who is interested in information but can’t attend the session may call Cunningham at 462-3857, or email her at Tracey.Cunningham@bhddh.ri.gov

During 2017, 22 providers in the performance-based program offered employment services to 448 clients, Cunningham said. A total of 169 individuals found jobs, with only 24 of them losing employment, Cunningham said.

In the second year of the program, which offers enhanced performance payments, there are a total of 26 providers anticipating that they will be able to serve a maximum of 623 clients, she said. BHDDH has set aside $6.8 million for the performance-based supported employment program in the next budget.

But there have been difficulties training enough staff to provide supported employment services. BHDDH data presented at the forum showed a 31 percent vacancy rate in the full complement of staff – 234 positions – needed to maximize the program.  

Specially trained job coaches and other employment-related specialists for the performance-based program come from the direct care workforce, which is poorly paid and experiences high turnover.

The performance-based program is intended to boost the number of adults with developmental disabilities in regular jobs to help the state comply with the consent decree.

During 2017, the state met or exceeded the consent decree targets for employment in two of three categories: those who historically have spent their days in center-based care and sheltered workshop employees, according to figures provided by BHDDH.

There is one sheltered workshop left in Rhode Island and it will close sometime this year, said Tina Spears, the new consent decree coordinator.

The state has been lagging for some time in the number of young adults it has helped place in jobs. By now it was to have placed all of a total of 413 young adults recognized by the consent decree as having left school between 2013 and 2016.

At the end of 2017, the total number of  job holders in this young adult group was 177, according to the BHDDH data.  

RI ORS Official Queried About 28 In Olmstead Consent Decree Population Waiting For Services

By Gina Macris

The names of 28 adults with developmental disabilities, ostensibly protected by a 2014 federal consent decree mandating they receive job-related services, are nevertheless on a waiting list for assistance from the Rhode Island Office of Rehabilitation Services. That figure is 5 more than ORS reported as of Feb. 1.

Joseph Murphy                   Photo By Anne Peters 

Joseph Murphy, vocational rehabilitation administrator for ORS, gave an update on the waiting list Feb. 13 when he attended the monthly meeting of the Employment First Task Force, a group created by the consent decree which is representative of individuals with developmental disabilities, their families, and community organizations working with them.

The waiting list had a total of 399 names as of Feb. 7, according to an ORS web page, with most of the affected individuals having a wide variety of significant disabilities.

Of that group, the 28 individuals at the center of the discussion at the task force meeting have developmental disabilities, physical or intellectual challenges that have been present since birth or childhood. These applicants for ORS services are supposed to have legal protection through the Olmstead consent decree against having any waiting period for services – a fact pointed out by Deb Kney, Director of RI Advocates in Action. The consent decree derives its name from the U.S. Supreme Court decision which clarified the integration mandate of the Americans With Disabilities Act. 

Murphy said the consent decree monitor and the Department of Justice undoubtedly are watching the situation closely, as is the judge in the case. Murphy referred to comments made from the bench Nov. 30 by Judge John J. McConnell, Jr. about his concerns that adequate state and federal funding be available to provide the services the consent decree requires. The next court hearing related to the consent decree is April 10.

Murphy said the monitor, Charles Moseley, and DOJ lawyers will visit Rhode Island Feb. 26 through 28th  to assess the latest developments in the implementation of the decree. 

When he notified the monitor of the waiting list, Murphy said, the monitor reacted with dismay. “He said, ‘Oh my,’ “ Murphy told task force members.  Regulations of the federal Rehabilitation Services Administration (RSA) require the states to set up a waiting list for vocational rehabilitation services when they can’t serve all eligible applicants.

In this case, the waiting list was triggered by the state’s unexpected loss of about $3 million in federal aid, which was re-directed to Texas in the wake of Hurricane Harvey.

The regulations require states to prioritize the order in which someone is removed from the list according to the degree of a person’s disability. Rhode Island’s so-called “Order of Selection” policy list has three levels of disability, but ORS is planning to amend the criteria for the highest priority category

Currently, applicants for ORS services in the highest priority category are those with mental or physical impairments that limit their ability to function on the job in at least three of seven different ways cataloged in state policy.  A proposed amendment would reserve the highest priority status for individuals those whose disabilities affect them in a minimum of four ways, according to an ORS spokeswoman. A public hearing on the matter will be March 8.

Murphy said that because of the consent decree, ORS is working with the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals to help protected clients find employment-related support elsewhere. 

The waiting list didn’t go into effect until Dec. 19, nearly three weeks after it was supposed to start, because changes in ORS policy needed formal approval from the federal RSA, Murphy said.

On the first day, there were already 324 names on the list, he said. Counselors “are in shock,”  Murphy said.

Murphy said the waiting list is “particularly awful because we were just starting to make headway” serving the consent decree population.

No one is affected who was already receiving services when ORS imposed the waiting list.

ORS receives $10.4 million from Title 1 of the Elementary and Secondary Education Act.But in the last few years it was able to supplement that basic grant with as much as $3.5 million in so-called “reallotment" funds  collected by the federal RSA from states that don’t meet their vocational rehabilitation obligations and re-distributed elsewhere.  For the federal fiscal year that  began Oct. 1, the re-allocation funding came to just $532,000.

While the reallocation money wasn’t set aside for clients with developmental disabilities, a lot of it went to help this group because that’s where the demand was, Murphy said. He characterized the consent decree as an “unfunded mandate.”

OP-ED: Safety Net For Most Vulnerable Rhode Islanders Should Be Lawmakers' Top Priority

 RI General Assembly Photo

By  Louis P. DiPalma

As legislators, we should treat each taxpayer dollar with the utmost respect, seeking to use it as efficiently as possible. As we grapple with a $200 million deficit in the upcoming budget, we should make it our top priority to protect the most vulnerable in our state — children and families, individuals living with intellectual/developmental disabilities and/or mental health issues, and seniors.

We should see all of our budget items through the eyes of the clients being served. When General Assembly members discuss how to fund the Department of Children, Youth and Families (DCYF), we should understand how the agency operates and the challenges the families and children face. Similarly, we should understand the real impact upon clients served by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). Legislators learn from community advocates and residents being served by nursing homes, group homes, child-care programs, behavioral health-care facilities and numerous health and human service programs.

The budget is a policy document first, and a fiscal document second. It is a reflection of our priorities.

At a recent Senate Finance Committee hearing, Health and Human Services Secretary Eric Beane stated: “While state spending on health and human services has increased in real terms since the worst of the Great Recession, our belts have remained tight, and spending is below where it was in 2008, once you adjust for inflation. I’d also note that medical costs have historically risen faster than inflation, another sign that we continue to drive savings.”

Gov. Gina Raimondo’s Working Group to Reinvent Medicaid found savings of about $100 million in annual Medicaid expenditures, without cutting eligibility or reducing benefits, which will save $1 billion over 10 years. The General Assembly supported this effort.

Further, the governor has appointed new directors to both DCYF and BHDDH to reform practices and programs and ensure some of the most vulnerable populations have high-quality programs. We should work to understand how funding patterns in the respective agencies are impacting outcomes for these individuals.

Some suggest we spend too much on these programs and that they are part of our fiscal problem. I disagree wholeheartedly. DCYF and BHDDH have been underfunded for many years, even as they are transforming programs to do more with less. Recently, the General Assembly passed legislation to reform DCYF by “reinvesting the benefits that accrue from the more efficient and effective utilization of congregate care, foster homes and community-based services.” Additionally, DCYF and BHDDH are under intense scrutiny from the U.S. District Court as they work to meet the conditions of their respective consent decrees.

We cannot continue to leave these agencies underfunded. We should ensure the well-being and safety of our state’s most vulnerable citizens.

We should work closely with our state’s partners, the multiple private and public providers statewide, in making certain we wisely invest precious taxpayer dollars in early intervention and prevention. And we should maximize our use of federal dollars to offset the impact on Rhode Island taxpayers.

I encourage all Rhode Islanders who care about these issues to get involved. Make sure that your legislators are working to protect the well-being of our state’s most vulnerable people. It is critical that you make your voices heard.

Louis P. DiPalma is a Democratic state senator from Middletown. He is first vice chair of the Senate Finance Committee.

Nearly 400 Wait For RI ORS Services, Including 23 Protected By Olmstead Consent Decree

By Gina Macris

In two months – from Dec. 1 to Feb. 1 – a total of 392 job hunters with disabilities have added their names to a waiting list for assistance from the Rhode Island Office of Rehabilitation Services (ORS) at the Department of Human Services.

ORS established the waiting list for rehabilitation services because of a dramatic reduction in so-called federal vocational “reallocation funds” distributed solely at the discretion of the federal government. 

Of the 392 individuals who were waiting for services Feb. 1, 336 have significant disabilities that make them “priority one” clients, according to a spokeswoman for Ronald Racine, the ORS director.  

Within the highest priority category, 23 individuals are protected by a 2014 federal consent decree which requires the state to find jobs for adults with intellectual or developmental disabilities who have been isolated in sheltered workshops or day programs, according to Racine’s spokeswoman. The decree takes its name from the Olmstead decision of the U.S. Supreme Court, which spelled out the integration mandate of the Americans With Disabilities Act. 

Those protected by the consent decree are being referred to employment-related services offered through the Division of Developmental Services (DDD) at the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH.)

According to a BHDDH spokeswoman, Tracey Cunningham, the Chief Employment Specialist at DDD, confirms clients’ eligibility and refers them to DDD social workers who help them find private providers of employment services.

Racine has emphasized that those clients who were receiving rehabilitation services before December 1 are not affected in any way by the waiting list.

For the past several years, Rhode Island has received an average of about $3.6 million in rehabilitation reallocation funds, which are given up by states that don’t meet their obligations for local support of job-related services and are re-distributed by the federal Rehabilitation Services Administration (RSA).

In the most recent round of redistribution, the federal RSA awarded $33 million to Texas because of the economic effects of Hurricane Harvey, with Rhode Island and other states receiving much less than they had expected.

The re-distribution went into effect for current federal fiscal year, which began Oct. 1. Rhode Island sought $5 million in reallocation funds for the current fiscal period, but was awarded only $532,000.

Rhode Island still receives a regular grant for rehabilitation services under provisions of Title I of the Elementary and Secondary Education Act - $10.4 million for the federal fiscal year that began Oct. 1, according to Racine.

The ORS waiting list does not affect high school special education students who seek separate ORS-sponsored pre-employment transition services intended to acquaint them with the world of work.

These services include job exploration and internships, training in social skills and independent living, as well as counseling on opportunities for more comprehensive transition programs or post-secondary education, Racine has said.

A total of about 665 students have signed up for pre-employment transition services during the current school year, according to ORS figures.

Detailed information about the list is on an ORS webpage here.

RI Makes Modest Gains in DD Employment As Pace of Job Placement Slows, Court Monitor Says

By Gina Macris

Rhode Island made relatively slight gains in helping adults with developmental disabilities find part-time jobs during the third quarter of 2017, according to an independent court monitor.

Of 3,418 individuals with developmental disabilities protected by a 2014 federal consent decree, the state is required to ultimately provide supported employment for 2,501, not including teenagers who are still in high school, according to Charles Moseley, the monitor. He said a total of 573 were employed at the end of September, 2017, more than double the 268 who had jobs a year earlier.

The 573 jobs reflect an increase of 305 placements in the 12 months following Sept. 30, 2016.  

Moseley also said the state should get credit in meeting consent decree goals for another 16 job placements involving individuals who no longer receive developmental disability services or have passed away.  

“Although these data are encouraging, it is important to note that the quarterly placement rate has dropped from 119 individuals for the quarter ending March 31, 2017 to 63 individuals for the quarter ending June 30, 2017, to 29 individuals during the current reporting period, the lowest quarterly increase over the past six quarters,” Moseley said.

Moseley oversees the implementation of the 2014 Olmstead consent decree, which is intended to correct Rhode Island's violations of the integration mandate of the Americans With Disabilities Act by Jan. 1, 2024. 

The numbers show mixed progress when they are set against the rolling employment targets for three groups protected by the consent decree: young adults, sheltered workshop employees, and those who receive non-work services in a day center.

By Sept. 30, 2017, the state had exceeded the consent decree’s employment goal for the so-called “day” population nearly three times, with 285 placements against a benchmark of 100 for Jan. 1, 2018.

For the sheltered workshop group, there had been 132 placements, or 88 percent of the goal of 150 for Jan. 1.

Among the so-called “youth exit” group, the state had placed 172 individuals in jobs, or 39 percent of the benchmark, a total of 442 young people who left school between 2013 and 2016.

Moseley noted that total number of young adults protected by the consent decree has been fluctuating. The U.S. District Court had ordered the placement of all members of the “youth exit” group by July 1, 2016.  At the time, the state had identified only 151 persons in that category.  Moseley, with the backing of U.S. District Court Judge John J. McConnell Jr., required the state to make a more thorough search for young adults who fit the eligibility criteria for developmental disability services, and by June 30, 2017, the total had increased to 497, according to Moseley’s report.

With the state’s improved ability since June to identify individuals who do not receive services for any number of reasons, mostly by choice, the number in the young adult group has come down to 442, Moseley said.

The state has agreed to a plan to find jobs for 50 percent of the young adults by April 30 and for the remaining 50 percent by Sept. 30, according to Moseley.  Anyone who chooses not to work will be identified through a variance to the state’s Employment First policy by Feb. 28.

Real-time information on the number of job placements, the fluctuating size of the overall consent decree population, and other data will have to wait until the state has launched its electronic case management records system for developmental disabilities, sometime in the next two to three years.

In his report, Moseley stuck to the numbers for third quarter of 2017 and did not get into any analysis or recommendations on how the state is trying to achieve its goals.

Moseley did say that the state Division of Developmental Disabilities (DDD) and the Office of Rehabilitation Services (ORS) are working together to analyze data from successful job placements to further improve their employment-related supports.

And he noted that since Jan. 1, DDD has adjusted a performance-based supported employment program to try to make it more attractive to private providers of job-related services.

The next U.S. District Court hearing on the status of the consent decree is scheduled for April 10. 

To read the monitor's report, click here. 

RI BHDDH Banking On Pilot With Higher Federal Match To Preserve Status Quo On DD Services

By Gina Macris

Rhode Island Governor Gina Raimondo’s budget for developmental disability services creates a dramatic imperative for cost-cutting during the next fiscal year, one that would reduce spending by a total of $21.4 million in state and federal Medicaid funding.

Developmental disability administrators are exploring the option of a pilot Medicaid program with a 90 percent federal match called a Health Home to fill in the gap, but have not yet determined whether it is feasible, and if so, to what extent.

The overall $21.4 million reduction represents the difference between the governor’s $272.7-million proposal for resolving the current deficit in developmental disabilities and the lowered spending ceiling of $250.8 million for the next budget cycle. The budget reduction would involve slashing $18.3 million in reimbursements to private providers and cutting almost $3.1 million from the state-operated network of group homes effective July 1.

Raimondo’s budget numbers reflect a central tension between those who believe that the state simply spends too much on Medicaid entitlements and those who believe that services for adults who struggle daily to cope with developmental disabilities have been chronically underfunded.

Raimondo’s plan for the 2019 fiscal year beginning July 1 treats a multi-million dollar deficit in the existing budget as a one-time event, while the record of the last several years shows that the shhortfall in developmental disability spending is a chronic or structural problem in which the actual cost of authorized Medicaid services exceeds the budgeted figure. 

In addition, Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) officials have made it clear that an improved assessment for gauging individuals’ support needs has been resulting in higher per-capita costs. The conversion from the old assessment to the new one, a process which started in November, 2016, is expected to take another year or two to complete as clients of BHDDH undergo re-assessment, one by one.

BHDDH officials did discover incorrect implementation of some questions in the cases of 46 individuals assessed with the new instrument, resulting in financial authorizations that were higher than appropriate.

In a recent interview, Rebecca Boss, the BHDDH director, said assessors have been retrained on exactly when they should ask those follow-up questions about behavioral and medical needs. The department has no intention of discontinuing the assessment, she said.

For the 2019 fiscal year, BHDDH officials have an idea about how to bridge the funding gap that they say makes both fiscal and programmatic sense. 

 The idea involves a new approach to case management for adults with developmental disabilities called the Medicaid Health Home. The approach would bring in significant increases in federal money, but the concept has yet to be fleshed out.  And the state is only considering a pilot program to test the model.        

 Successfully implementing the new Health Home option appears to be the state’s only safety net to protect the developmental disability service system from service reductions, waiting lists or rate cuts to providers.

In her budget message, the governor promised to reduce neither eligibility nor services for Medicaid recipients, which include adults with developmental disabilities.  

Boss, the BHDDH director, was reminded of Raimondo’s pledge and was asked whether maintaining existing levels of eligibility and services would mean cutting reimbursement rates to service providers.

Boss said, “I don’t think the department is ready to go to a rate cut” to service providers.

Boss said BHDDH has scrapped a plan for reducing reimbursement rates to providers for a relatively small number of group home residents during the third quarter of the current fiscal year.

The state’s private providers of developmental disability services have been struggling financially for years.

“The fiscal stability of our providers is very important to us,” Boss said. BHDDH counts on its private providers to enable the state to comply with demands of a 2014 federal consent decree which invokes the integration mandate of the Americans With Disabilities Act in requiring Rhode Island to end its over reliance on segregated daytime care and sheltered workshops for adults with developmental disabilities.

Boss said the budget for the next fiscal year contains $6.8 million for  reimbursements to private providers for delivering supported employment services required by the consent decree. That’s $2 million more than is expected to be paid out by the end of the current fiscal year for employment-related supports.

The possibility of assigning case management – or coordination of care – to a third-party through a Medicaid Health Home is appealing to BHDDH officials for a couple of reasons.

Using the Medicaid Health Home approach could save the state significant sums of money in the short term. States can apply for an enhanced federal reimbursement rate of 90 cents for every state dollar expended for a maximum period of two years, according to the Centers for Medicare and Medicaid Services.

The current federal Medicaid reimbursement rate is a little more than 50 cents on the dollar.  Medicaid funds all developmental disability services in Rhode Island.

The concept also could solve a looming compliance problem with federal Medicaid regulations. 

In the next few years, the Medicaid Final Rule on Home and Community Based Services will require case management to be conflict-free. That means it must be divorced both from funding agencies, like BHDDH, and from providers who have a vested interest in billing for services.

BHDDH now has about 24 in-house social workers who coordinate services for some 3,700 adults with developmental disabilities.

The Health Home option, a managed-care arrangement which pays a per-capita rate, was first introduced as part of the Affordable Care Act in 2010 and was crafted to encourage providers of medical care to take a holistic approach to their patients’ well-being.

To what extent the objectives of Health Homes encompass the social services has yet to be determined.

Boss indicated that many questions remain unresolved, such as:

•  Which clients of the Division of Developmental Disabilities would qualify for Health Home coverage?
•  What kind of entity would be equipped to serve as a Health Home for case management, and possibly other services?

According to the Center for Medicare and Medicaid Services, (CMS) Medicaid clients eligible for Health Home coverage must have at least two chronic conditions, or one chronic condition, with risk for a second; or have a serious and persistent mental health condition.

 It is not unusual for individuals with cognitive challenges to also struggle with mental health issues or chronic medical conditions, or both. 

 CMS says that Health Homes may offer what it calls comprehensive care management, as well as care coordination, health promotion, comprehensive transitional care follow-up, patient and family support, and referral to community and social support services.

 Boss envisions a two-year pilot program for the Health Home model, beginning sometime in the next fiscal year.

Here are the overall budget numbers, which reflect all sources of funding for all developmental disability programming, both state operated and private:

Fiscal Year 2018

•  Currently authorized: $256.9 million

                                           plus $15.3 million

•  Governor’s proposal:  $272.2 million

Fiscal Year 2019

• Governor’s FY 18 revised budget: $272.2 million

·                                                          minus $21.4 million

•   Governor’s proposal:                   $250.8 million

The $21.4-million reduction includes a cut of nearly $12.5 million in state funding and a loss of $8.4 million in federal Medicaid reimbursements, according to the budget proposal. Other miscellaneous pluses and minuses round out the $21.4 million total cut.

After the first quarter of the current fiscal year, the Division of Developmental Disabilities was overspending at a pace of almost $26 million in federal and state Medicaid funding, including a state share of $12 million. 

But a second-quarter spending report shows the projected deficit for developmental disabilities has shrunk to about $15.7 million, including about $5.8 million provided by the state and nearly $9.9 million in federal funds.

The governor’s proposal covers nearly all of the $15.7 million shortfall. The remaining gap concerns a bookkeeping question: whether BHDDH or the Executive Office of Health and Human Services should be charged for the state’s contract with the independent consent decree monitor. 

Raimondo Would Make Steep Cut In Bottom Line On DD Payments In Next Budget

By Gina Macris 

Governor Gina Raimondo has sent the General Assembly a budget proposal that adds enough  money  to developmental disabilities before June 30 to prevent  waiting  lists or reductions in services but then dramatically reduces funding in the fiscal year beginning July 1.

Raimondo’s amended budget for the current fiscal year, released Jan. 18, would add nearly $10.4 million in state and federal Medicaid funding for reimbursements to private providers of developmental disability services, raising the total from about $228.1 million to nearly $238.5 million.

Beginning July 1, however, the total federal-state Medicaid allocation for developmental disabilities would drop to about $220.1 million. That would mean a reduction of 8 million from the currently enacted bottom line of $228.1 million. Viewed another way, it is $18.3 million less than her revised proposal for the current fiscal year.  

In the executive summary to her budget, Raimondo indicates that the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) may begin realizing savings in the next budget from a change in its current fee-for service reimbursement model. 

BHDDH is exploring a shift toward some sort of per-capita payment system, including the possibility that provider agencies may become Health Homes under provisions of the federal-state Medicaid program. 

Health Homes coordinate all care for some Medicaid-eligible individuals in a way that takes into account the needs of the whole person, including primary and acute medical care, behavioral care, and long-term supports.

During the budget briefing for the media, Rebecca Boss, the BHDDH director, said there is “no clear path” to any one alternate reimbursement model, but the agency is committed to finding one during the coming year.

BHDDH may be able to begin realizing savings from a different payment system in the second half of Fiscal 2019, Boss said.  For example, the Medicaid Health Homes model offers an enhanced federal match for certain services, 90 percent instead of the usual 50 to 60 percent.

She said BHDDH wants flexibility for service providers and predictability in costs.

“I think fee for services has been very challenging to providers,” she said. .

After Raimondo submitted her budget to the General Assembly, Sen. Louis DiPalma, D-Middletown, expressed concern about how the administration arrived at the $18.3 million reduction in funding for developmental disabilities beginning July 1.

“We need to look at how we can fund the human services more efficiently and effectively,” he said, “but there needs to be a body of evidence” supporting the numbers.

One of the fundamental principles of Raimondo’s budget plan, according to her executive summary, is  to protect Rhode Islanders in need.

DiPalma said he likes the job Raimondo has done as governor, but historically, from the perspective of the General Assembly, “we have not funded BHDDH the way that we should.”

He said he was concerned about the lack a firm plan for implementing an $18.3 million budget reduction without putting vulnerable people “in harm’s way.”

Boss, meanwhile, said a supported employment program for adults with developmental disabilities will continue with $6.8 million that will be embedded in the overall allocation for reimbursements to private service providers in the next fiscal year.

BHDDH did not use $2 million of the initial allocation for the supported employment program, also $6.8 million, but the unspent money will go toward helping to close an existing deficit in developmental disabilities of about $12 million in state dollars. 

Raimondo’s budget proposal includes no allowance for raises for direct care staff who work with adults with developmental disabilities, as had been the case in the past two budgets.

But if economic projections look better in May than they did in November at the semi-annual Revenue Estimating Conference, raises would be on the table, Boss said. 

Funding for the state-operated group home system, Rhode Island Community Living and Supports (RICLAS), would temporarily increase before turning downward July 1.  RICLAS, which cares for about 150 people, is now funded at $28.8 million. Raimondo's plan would raise that total to $33.7 for the current fiscal year. For the next fiscal year, total funding for RICLAS would be nearly $30.7 million. 

The full budget, as submitted to the Rhode Island House, is here: http://webserver.rilin.state.ri.us/BillText/BillText18/HouseText18/H7200.pdf

Revamped Fedcap Program in RI Regains Full Two-Year DD License, With Stipulation

By Gina Macris

Rhode Island has renewed the operating license of Community  Work Services (CWS), the developmental disability service provider on probation for the past year, with the stipulation that it continue detailed or “enhanced” reporting on its activities through April.

The full license, issued Dec. 19 by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, (BJDDJ) is valid for two years, the standard duration for organizations of its type.

CWS  had come under fire from the federal court monitor overseeing the state’s implementation of two disability rights agreements with the U.S. Department of Justice that are intended to correct an overreliance on sheltered workshops and segregated day programs that violates the Americans With Disabilities Act (ADA.).

The monitor, Charles Mosley, said shortcomings at CWS had prevented the state from meeting goals for job placements required by the first of the two civil rights agreements,  the so-called Interim Settlement Agreement of 2013.

That document focused on the former Training Through Placement (TTP), a sheltered workshop in North Providence, that used the special education Birch Academy at Mount Pleasant High School as a feeder program for its workforce.

Craig Stenning, former BHDDH director, brought in the Boston-based CWS in 2013 to turn around TTP. But after making some initial progress, the track record of CWS remained essentially flat for four years, according to Moseley, the monitor.  CWS is a program of the New York-based Fedcap Rehabilitation Services, whose website lists Stenning as senior vice president for the New England region and executive director of CWS in Massachusetts.

After the state gave CWS in Rhode Island notice last spring that it would not extend the agency’s probation beyond the end of 2017, CWS began a major overhaul, including a complete turnover of personnel.  The executive director of CWS in Rhode Island is now Lori Norris.

The most recent courtroom review of the situation occurred Nov. 30 before Judge John J. McConnell Jr. The next hearing is April 10, before the end of the enhanced reporting period stipulated in the new license.