COFAR blog

There are few burdens greater than having to care for a loved one with a severe intellectual disability, particularly when the state declines to provide any help.

At a public hearing earlier this week, members of the Legislature’s Children, Families, and Persons with Disabilities Committee heard stories from a number of people whose loved ones have fallen through the cracks in the system. 

The Committee is considering a number of bills intended to help people who find themselves just outside of the Department of Developmental Services’ strict eligibility standards, or for whom, there just hasn’t been any funding for community-based residential, day, work, and other programs due to years of budget cuts.  There’s some hope that a recent uptick in state revenues will translate into some additional funding of these programs. 

Linda Boucher testified that her son attended special education programs from the time he was 3 until he reached the age of 22.  At that age, special education services end, and people needing services must apply to DDS, which uses a “rigid” standard to determine eligibility.  If a person’s IQ measures above 70, eligibility is denied even if the person has significant problems in adaptive functioning, including very low conceptual, practical, and social skills.

Boucher’s son scored 75 on an IQ test and was denied DDS services.  He had been in a day program, she said, but has been home ever since.  Boucher has a full time sales job that often requires her to be away from home for as much as 10 hours at a time, and sometimes requires her to be away from home overnight.  It’s as if her son is under house arrest, she said.

“Where do I go?  I need help,” Boucher said, her voice cracking with emotion.  Ironically, Boucher worked in the Department of Mental Health during the Dukakis administration and helped develop many of the community-based programs for persons with intellectual disabilities that are now being cut.  She said no one from DMH or DDS will now return her phone calls.

One bill before the Committee (H. 3527 ) would require the DDS to use a less restrictive standard in determining whether a person has an intellectual disability and is therefore eligible for DDS services.  The bill would bring the state in line with the American Association on Intellectual and Developmental Disabilities, in establishing eligibility for DDS services for IQ scores of “approximately” 70 or below.  This would prevent the rigid cutoff now used by DDS in excluding people from services.

One woman testified that she is concerned she will be forced to quit her job to care for her son, who is now 21 and needs one-on-one supervision.  He is not intellectually disabled, his mother said, but nevertheless lacks most social skills.  He currently attends a special education facility and is able to hold down a job.  But because he is not able to control his behavior, he must be supervised at all times.

Another bill before the Children and Families Committee (H. 983) would provide an additional $23.4 million in funding for DDS community-based programs for persons with special needs who are either turning 22 or have graduated from high school. 

However, this bill would also direct that funds from the sale of developmental center properties be earmarked for community-based programs for persons turning 22.  We would support that language if the proponents of the bill would, in turn, support the continued operation of the developmental centers for those who choose to live in them.  Unfortunately, there’s not much chance of that happening.

It’s not only persons with disabilities who slip through the cracks in the DDS system.  There are also the direct-care workers who tend to be underpaid and under-trained, particularly in privately run group homes that operate under contracts with DDS.  One bill (S. 45) would establish a state task force to study the average compensation, level of training and turnover of these workers.

Lisa Gurgone, Executive Director, of the Mass. Council for Home Care Aide Services, noted that direct-care workers tend to struggle to make ends meet, and termed those workers “a piece of the puzzle left out of health care reform in Massachusetts.”  She and other speakers maintained that with the numbers of elderly and disabled people projected to grow rapidly in coming years, the state needs to develop a new workforce strategy to meet the demand.  The task force is a first step in that direction, they said.

One other bill, which COFAR supports, would provide easy public access to a wide range of information about direct-care worker turnover and compensation as well as compensation of top executives of DDS contractors.  The bill (H. 975) would require all of that information to be published on the DDS website. (The Arc of Massachusetts, which is heavily funded by DDS contractors, predictably opposes this bill.)

Finally, COFAR strongly supports H. 2683, a bill filed by Rep. Angelo Scaccia, which would establish an independent office of quality assurance that would monitor the care of intellectually disabled persons throughout the DDS residential care system.  COFAR has raised a number of questions in recent weeks about the current DDS licensure and certification system for community-based group homes. (The Arc, of course, opposes this bill as well.)