To the Breaking Point: Structural problems in health and human services leave clients and caregivers struggling

After 16 years of service in the Ocean State, Resources for Human Development Rhode Island (RHD-RI) closed its doors at the end of last month. Compared to Rhode Island’s other developmental disability (DD) providers, it’s a small agency, serving approximately 120 clients and only providing daytime service. Its closure was the inevitable result of years of dealing with a broken system that is failing its clients, providers and families.

“I think for organizations, there’s some specific structural problems,” says Tina Spears, president of Community Provider Network of Rhode Island, a trade association representing a good chunk of DD agencies in the state. “COVID unveiled many of them in health and human services.” Rhode Island has had a long history of providing equitable services to adults with disabilities, but the pandemic pushed it toward a breaking point.

In the years shortly after the 2008 financial crisis, RI government departments were faced with budget cuts. The Department of Behavioral Health, Developmental Disabilities and Hospitals began a department-wide reform effort to streamline service, provide transparency and simplify billing. Provider agencies across the state were required to switch to a fee-for-service model, charging only services they provided the client. They could no longer bundle services, and rates for day-center-based activities were lowered. Rates for employment placement or community activities were bumped up. 

The way the state determines how much funding a client needs is broken from the start. When a new client entered the  developmental disabilities system, they would be given an assessment called the Supports Intensity Scale. The scale is meant to tease out a person’s specific level of need and determine how often they need support. It’s more of a diagnostic model, but the state uses it to determine how much funding a particular person needs, something the scale was not designed to do.

Once a client receives their assessment on the scale, they are assigned a place in one of five tiers. Two of the tiers are for special circumstances, with the vast majority of clients going onto one of the other three. Each tier was written on a scale, assuming a certain degree of staffing ratios and need. Within each tier of funding are rates depending on the living situation for a client. The end result is less money for staffing, which means agencies have to do more with less, and that’s having a compounded negative effect on maintaining a sustainable system for adults with disabilities. Specific clients may get declined because they don’t bring enough money into an agency to justify the expense.

Less money for agencies means there is a very direct impact on the workforce that serves those clients. Ten years ago, the average hourly wage for a direct service professional hovered around $10 or $11. Right now it’s around $13.50 an hour on average, well below the $17 starting pay for DSPs in neighboring Massachusetts. Thanks to the low pay, DSPs often have to work at multiple agencies or have multiple jobs to make ends meet. The turnover rate for DSP is pretty high, ranging anywhere from 10% to 40% depending on the agency. At some of the bigger agencies, turnover can get as high as 70%. It’s a system failing the people who work for it. Spears and CPNRI have advocated for higher wages for direct service professionals across the board. Agencies will find it easier to attract a skilled, stable workforce if they can afford to pay higher wages.

Any change is slow to come, and Rhode Island is running out of time.

In 2013, the Department of Justice (DOJ) was drawn to Providence to investigate civil rights violations. A program called Training Thru Placement, in conjunction with Harold Birch Vocational School, had been targeting students with developmental disabilities and recruiting them to work in a sheltered workshop. Sheltered workshops segregate persons with developmental disabilities to do piecemeal, repetitive work for subminimum wage without providing them with any meaningful employable skills. DoJ came in, and settled for an interim agreement in Providence to rectify the situation before turning their attention to sheltered workshops across the Ocean State. The state of Rhode Island agreed to the consent decree shortly after.

Now the state of Rhode Island has a list of goals to hit by 2024. These goals range from employment placement, to person-centered planning, to employment abilities, to integration and inclusion. “I would say they were okay,” says Spears of the state’s performance since the consent decree (pre-COVID). “If I were to rate what they were doing, I’d say they were a level C.” COVID has thrown all that into question, and it’s uncertain whether Rhode Island will reach those goals.

Not all agree that the state has been doing everything it could to uphold the consent decree. Chief Judge John J. McConnell said at a July hearing: “Everyone is attempting to follow the requirements [of the consent decree] but they are stymied by a lack of fund.” COVID especially has changed the focus of agencies, as many now have to spend money and center services around social distancing and new cleaning regimens. The judge also signaled he was ready to order the state to find the money to fund the system.

But that’s the rub, isn’t it? Rhode Island is three months into the new fiscal year, with Speaker Nick Mattiello and Governor Gina Raimondo pledging not to pass a budget until after the election. With the federal government practically sclerotic in passing new stimulus or funding for state governments, and the governor asking for broad deep cuts from every agency, the future success of the system looks uncertain.