No Entry for Robert – Turning 22 Our son Robert is extremely vulnerable to being taken advantage of and is unable to safely care for himself. We need to take the lead in many decisions made on his behalf regarding his care and welfare whether a complex decision about his supports or his medication for a health condition.   Despite that, there is no state agency to serve my son when he becomes an adult. He has even been denied eligibility for the Department of Developmental Services (DDS).    Robert is 19 year old young adult who was diagnosed with autism spectrum disorder at the age of 4. He was unable to be served in a regular public school, even with supports, so he was placed in a specialized private school setting. Since July 2003, he has gone daily to a full year private day school for individuals with autism between the ages of 3 and 22.   Robert has thrived in this environment because he has 1:1 support throughout the day. In this very structured and supported environment, although well below grade level in all academic areas, Robert has been able to learn a variety of concepts not typically mastered by someone at his cognitive functioning level. If you ask a neuropsychologist about Robert’s imbalance of skills we believe they would tell you that these are “splinter skills” he has acquired and not an indication of his overall level of functioning. Each report of Robert’s IQ tests conducted over the past 10+ years has clearly stated that the testing results were not valid as they could not be accurately calculated due to the significant variability in the subtest scores.   Splinter skills are not uncommon to individuals with autism. Therefore, Robert is more proficient with models and spatial reasoning skills than he is with other things, yet he is unable to be left alone in ANY environment because he does not have the skills required to keep himself safe.   Despite the reality of Robert’s functioning he has been denied eligibility at DDS due to the IQ tests. But there is no alternative agency for Robert. The Department of Mental Health as of this date has not considered individuals who have ASD or other developmental conditions but have higher IQ scores. The Massachusetts Rehabilitation Commission (MRC) has little in the way of community living supports.   Consequently Robert and many others have no doorway to walk through for adult services. This not only includes those with ASD, but others who may have developmental disabilities such as Prader-Willi Syndrome, Cerebral Palsy, etc.   In addition even those eligible for services do not automatically receive supports. There are 700 plus young adults who turn 22 years annually, eligible for DDS services but the funding is not adequate to provide all of them employment and community living assistance (family support, supported living or residential supports.)    What happens to the individuals turning 22 and/or who have reached adulthood in the past and not received supports (approximately 2400 over the past 5 years)? Some are able to do well because their family has the ability to continue supporting them and during daytimes they are either independent through work or a combination of work and volunteer/social activities. Most continue to have a need and they receive partial assistance through MassHealth day habilitation services or MRC assists intermittently (not long term) to re-train for work. But many are reliant on their families while some become homeless and are vulnerable to risk due to their living situation.   Robert’s story is only one story of many we can and hope to share with you. But if you care about the plight of people with disabilities – help us as we work annually to build up the funding which is the largest barrier individuals and families face. And also to pass bills which will ensure that individuals like Robert will at least be eligible for some services (DDS Eligibility and Bridges to Success bills.)   Please note that this story has been edited from original testimony written by parents and includes supplemental information from The Arc.

Testimony at EOHHS Hearings of December 9, 2011

Testimony from The Arc of Massachusetts regarding various bills, Fall 2011, Oct. 31, Nov. 15

Testimony on Eligibility Bill from families – Olson, Le, Holden

Some pictures and postings from hearings this session.