Judge signals overhaul of RI’s Developmental Disability system

By Gina Macris,Developmental Disability News

Chief Judge John J. McConnell, Jr. of the U.S. District Court is gearing up to order a soup-to-nuts overhaul of Rhode Island’s troubled developmental disability service system and he wants a detailed plan hammered out during the next year. 

Chronic problems exacerbated by the COVID-19 pandemic have pushed McConnell’s long-simmering concerns over the fiscal stability of developmental disability services “front and center,” as the judge put it during a public hearing in mid-May.

At that time, he asked an independent court monitor to recommend steps for ensuring the long-term survival of a reformed system that will be in full compliance with the Integration Mandate of the Americans With Disabilities Act (ADA). The proposed directive resulted from the monitor’s recommendations.

The order, sent to lawyers for comment earlier this month, says the state must fix systemic problems that pose “fiscal and administrative barriers” to compliance with a 2014 civil rights consent decree, which calls for integrated work and non-work activities based on a 40-hour week of services.

The barriers to compliance include the major pillars of a fee-for-service system the General Assembly enacted in 2011 that incentivized segregating adults with developmental disabilities in sheltered workshops and day care centers, in violation of the ADA’s Integration Mandate, according to findings of the  U.S. Department of Justice (DOJ). The Integration Mandate was re-affirmed by the U.S. Supreme Court in the 1999 Olmstead decision.

Although the last sheltered workshops closed in 2018, some center-based day programs were still in operation before the pandemic hit.

Hearing Scheduled July 30

McConnell has given state and federal lawyers until July 30 to  tell him why his three-page directive should not move forward as a formal order, with a deadline of June 30, 2021 to develop a new system that meets the needs of the roughly 4000 individuals it serves.

Lawyers for the state and the DOJ have responded with an agreed-upon list of topics to be discussed at an upcoming hearing on the status of consent decree compliance.

The agenda, filed with the court July 23, said the state would address both long-term compliance with the consent decree and the immediate pressures posed by the COVID-19 pandemic on the developmental disabilities system.

Specifically, the lawyers said they would present information on:

• Integrated employment and day services and the state’s phased reopening
• Support for providers and families during the continuing COVID pandemic
• Preparations for a potential second wave of the pandemic
• The fiscal issues and administrative barriers identified by the judge and a plan by the state to resolve them in phases, beginning with quarterly funding authorizations, staffing ratios, and the requirement to bill for daytime services in 15-minute increments.

Finally, the agenda said the discussion would include the state’s plans for substantial compliance with all requirements of the consent decree by 2024, the year it expires.

The judge’s proposed order would involve the state’s Medicaid administration, the Governor’s office, and the General Assembly in developing solutions to problems in the developmental disability service system and would require progress reports every two months between August 30 and June 30, 2021.

McConnell also wants the state to collaborate with families and providers in developing their plans.

McConnell is expected to take up the proposed order during the remote video hearing on July 30, beginning at 2 p.m. The public may sign in to attend no later than 1:45 p.m. through video or telephone, with instructions posted on the court’s public access web page, here.

COVID-19 Forced Near Shutdown Of Day Services

The coronavirus has hit hard at gains made in the number of regular jobs worked by adults with intellectual or developmental disabilities and the time they spend enjoying non-work activities as part of their communities.

A spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) indicated that about 35 percent of those who had jobs March 1 were still working at the end of May.

Non-work recreational and other activities also have been decimated, but no figures were available from BHDDH about the number of people who don’t have any daytime supports or can’t get the same number of service hours they had before the pandemic.

Parents expressed alarm about a lack of guidance on the resumption of services during a July 21 on-line forum hosted by the Community Provider Network of Rhode Island (CPNRI.)

Susan Willemsen, a parent, wrote in the chat box that accompanied the video meeting: “This is very scary, especially for the parents who need to work and your child does not understand the situation. It is very difficult to be home working 40 hours to survive and take care of a child who is 100% dependent on you. Trying to understand where we go from here.”

Tina Spears, executive director of CPNRI, said providers remain in a precarious financial position and called on the entire developmental disabilities community to press state and federal officials for more funding and priority status for group home operators to conduct on-site testing and gain access to personal protective equipment.

By all accounts, some three dozen private service providers licensed by the state to support adults with developmental disabilities were in tenuous financial condition before the coronavirus pandemic hit Rhode Island in March.

Coping with the pandemic has further exposed gaps in funding and service delivery, which in turn raise questions about the providers’ ability to survive long enough to benefit from a court-ordered restructuring without more immediate and urgent intervention. 

For example, the need for social distancing calls for one-on-one or small group staffing, preferably with the same clients consistently matched to the same support people. But the current funding structure typically will pay for six hours a week of one-on-one support, according to Spears.

Judge Spells Out Requirements

McConnell, meanwhile, indicated he wants change from the first moment an individual or family applies for services from the Division of Developmental Disabilities (DDD).

McConnell said there is a need to consolidate application procedures “for all pertinent RI services into one process.”  That includes streamlining the process for determining Medicaid eligibility and eligibility for developmental disability services, respectively, as well as any other state-funded supports a person might need.

Within the developmental disability service system itself, the judge wants the state to “review, address, and develop a strategy” for resolving problems in the following areas:

• The process and timeline for determining DDD eligibility and individual budgets, as well as the process and timeline in which individuals select private provider organizations.
• The process in which families and service providers appeal DDD’s decisions on eligibility, designated level of need, or funding level.
• The requirement that providers document each staff person’s time, in connection with each client, in 15-minute increments during the day as a condition of reimbursement.
• Reimbursements that are linked to specific staff-to-client ratios. McConnell didn’t spell out the details of how those ratios hinder integration, but one provider has offered a memorable example: The provider said the staffing ratios forced him to group together five clients with widely differing interests for job exploration in one community setting where he could supervise without help from another staffer. 
• Funding authorizations for each client that last only three months at a time, with no ability to carry forward any unused portion of the budget beyond the designated fiscal quarter. That feature, combined with the fee-for-service structure of the billing services, means that unless there is 100 percent attendance by all persons at all times, the spending ceiling can never be reached. A consultant’s study several years ago found that providers billed for an average of 85 percent of funding authorizations.

The requirement that people with intellectual and developmental disabilities, recognized as life-long conditions, must periodically re-establish their eligibility status for services.

McConnell also asked the state to come up with:

• A clear definition of functions and activities for which funding is permitted, along with the associated rates for each.
• Different funding levels for different activities that are “responsive to individual support needs.”
• Guidance on combining individual budgets at the request of the people involved

With the state shutdown beginning in March, service providers shifted their attention to the safety of those in group homes.

A total of 10 group home residents have died from COVID-19, according to a BHDDH spokesman. As of July 21, 161 group home residents had tested positive and a total of 48 had been hospitalized at one point or another. Five people were in the hospital on July 21, the spokesman said.

Spears, the CPNRI director, explained during the virtual public forum that providers have faced unprecedented costs in securing personal protective equipment for staff, carrying out aggressive cleaning protocols and paying for overtime, while being unable to bill the state for many services.

Providers did get some emergency federal assistance channeled through the state, albeit less than what was originally promised, to continue operations through periods of the highest risk and to give temporary pay raises to staff. But those supports have now ended, Spears said, and there’s “no grand way or plan forward” for moving the system to a new normal.

Spears said a top priority is permanent pay hikes for staff, who have been chronically underpaid and have “a thousand reasons” during the pandemic to stay home.

State officials are waiting for Congress to decide on a second stimulus package before moving ahead to set the budget for the current fiscal year. The pace of budget deliberations is expected to pick up in early August, said State Sen. Louis DiPalma, D-Middletown, who is first vice-chairman of the Senate Finance Committee.

In a brief interview the day after the meeting, Spears said the imperative for moving forward with a plan for re-opening developmental disability services should flow from the state’s legal and moral responsibility, not the budget.

State officials can “sit in a holding pattern and worry about the budget all you want, but these are human lives we’re talking about,” she said.

Gina Macris is a career journalist with 43 years’ experience as a reporter for the Providence Journal in Providence, RI. She retired in 2012. During her time at the newspaper, she wrote two series about her first-born son, Michael M. Smith. Both series won prizes from the New England Associated Press News Executives Association.  Michael, now in his 30s, appears on the cover page, in front of the Rhode Island State House.