Eileen Vieira and Greg Mroczek both express concerns about the assessment used to determine funding for their adult children with developmental disabilities.
By Gina Macris
The issue of resources – a scarcity of services and the money to finance them – ran like a thread through a public forum on Rhode Island’s developmental disability system Nov. 9 that brought together families, provider agencies and state officials.
At the same time, participants applauded the willingness of new roster of state developmental disability officials to listen to their concerns.
Much of the discussion, during the meeting at the Cherry Hill Manor Nursing and Rehab Center in Johnston, concerned an assessment called the Supports Intensity Scale (SIS) that is used to assign individual funding packages to those persons receiving services.
“If there was adequate funding to pay for the needs” identified by the assessment, ”we would have much fewer problems with the SIS,” said Tom Kane, CEO of AccessPoint RI, a service agency.
“There’s not enough money there,” he said.
Kane and others expressed skepticism about the accuracy of the assessment.
For example, Greg Mroczek said his son and daughter are very similar in their disabilities and needs, and yet they were assigned different funding levels.
“It flies in the face of the accuracy of the tool,” he said.
Eileen Vieira, who has a son with developmental disabilities, said some people who do the assessments “have no clue.”
They are not familiar with the person’s medical conditions or mental health issues or what is happening in the client’s life, she said. She said she did not believe the SIS captured her son’s need for behavioral support.
Heather Mincey, administrator in the Division of Developmental Disabilities, acknowledged that “a lot of times the SIS administrators did not get all of the information” necessary to make an accurate assessment of a person’s needs.
On Nov. 6, the Division switched over to a new form of the SIS which Mincey said she believes “will help a lot.” Called the SIS-A, the assessment is designed to capture behavioral and medical needs that were sometimes not apparent in results of the original SIS, according to Mincey.
Kane said he has “never been a cheerleader for the SIS.”
The developer of the SIS, the American Association on Intellectual and Developmental Disabilities (AAIDD), maintains it differs from other assessments because it focuses not on shortcomings but on the supports an individual needs to be successful at a particular task.
Kane, however, said most family members and professionals in the field of developmental disabilities find it difficult to talk about the issues raised in the questions because “you have to examine what’s wrong” to arrive at the necessary supports.
“It’s a deficit-based tool,” he said.
A representative of AAIDD will visit Rhode Island to explain the SIS-A at an information and training session Nov. 17. (See related article.)
Mincey, meanwhile, encouraged parents to file appeals if they believe the SIS results for their sons or daughters are inaccurate – or if they have problems with a shortage of funds for transportation or other issues.
But Vieira indicated that the appeals are continuous and time-consuming, especially for parents who have full time jobs. “You have to appeal and you have to appeal,” she said.
Brian Gosselin, Chief Strategy Officer for the Executive Office of Human Services, said developmental disabilities officials will use feedback from appeals of decisions on the SIS, along with experiences trying to solve other problems, to improve the system.
In whittling down a backlog of 224 applications for adult developmental disability services, for example, workers learned that nearly half the submissions did not contain all the required documentation, Gosselin said. That experience will result in a redesign of the application process, he said.
An independent court monitor in a federal consent decree mandating expansion of community-based services for adults with developmental disabilities has pressed the state to work through the backlog and identify all individuals aged 14 to 21 who might qualify for services after high school.
One mother, Carla Russo, said her son left school in the 20013-2014 school year and still does not have adult services.
Iraida Williams, an employee of the Sherlock Center on Disabilities at Rhode Island College, asked whether the application materials would be available in Spanish. Williams has appeared at several public forums on developmental disability services since April 2015, to ask the state to hire a Spanish-speaking social worker or interpreter who could field questions from non English-speaking families.
“That’s the type of feedback that we need,” Gosselin said.
Tracey Cunningham, Chief Employment Specialist at the Division of Disabilities, said 23 service providers have applied for a supported employment incentive program that is gearing up as a result of the consent decree.
Nearly every one of the 23 providers has talked about taking on new clients in the process, Cunningham said, although she didn't expect the program to begin operations until January.
If that many agencies do expand, it would be a significant shift from a system that has been in a holding pattern because of a shortage of funding.
Cunningham said the Division of Disabilities also wants to hear from families who organize their own supports and might want to purchase supported employment services.
One mother, Mary Beth Cournoyer, said parents, who themselves have jobs, need to cover a certain number of hours of care for their sons and daughters and can’t afford to divert much, if any, funding to job development.
Cunningham said that “we are looking” at the possibility of providing additional funding for supported employment services rather than requiring individuals to stretch their budgets.
Gosselin, meanwhile, said that state officials will be working with consultants from the National Association of State Directors of Developmental Disabilities Services for the next six months to try to come up with better ways to serve individuals and families and at the same time comply with new Medicaid regulations affecting individuals with developmental disabilities.
All photos by Anne Peters