Ian is a 30-year-old young man with severe autism. He was in a day program with a 1:1 and transportation prior to Covid and had a community companion for a few hours a week. He also qualifies for 2 weeks a year of respite. He has received a few months of day program in the last 4 years, which ended due to staff leaving and being unable to replace them. This has taken an incredible financial and emotional toll on our family. I have been forced to reduce my hours and work overnights to provide the 24 hour care he needs. He generally sees no other people than family and his boredom and frustration result in multiple meltdowns and aggressions.

Tracy M., Chicopee

My son is able to attend a day program 3 days a week ONLY if his 2:1 staff don’t call in sick. There are only two trained staff for him. He lives with a caregiver who is burned out and he has no opportunities to do anything – he is simply contained and his behavior is “managed,” but he has no voice and no friends. He is Nicky, a Massachusetts resident whose name is already synonymous with protecting people (Nicky’s Law is named after him) yet he lives a desolate life after abuse with uncertainty and fear.

Cheryl Chan, Hubbardston

My son turned 22 a month before the pandemic. We have had limited services since. He does not want to go to a program and the 1:1 people presented to us have not been a match. They say he is too picky. Why wouldn’t he be able to expect someone who respects him and is willing to work with him on his terms? We have been lucky that our jobs are flexible but it is ridiculous. What will happen to him when we can’t do it anymore? At what point do I gather my life back?

Paula C., Shrewsbury

I have a 46-year-old daughter with multiple disabilities, one a behavioral issue. She attends social programs after program hours, but will soon have to stop because I’m a widow, elderly woman, and driving at night is becoming extremely difficult. If she has to stop these activities because I have no one to help, she will become extremely difficult to handle. I get 4 hours a week to help but this is not enough. I’m all alone and have no family except my daughter. I really need more hours for her as I’m getting older and it’s extremely difficult to handle this situation.

Judith L., Brockton

Our son Matthew has been awaiting a call to return to ANY dayhab program since his last day attended on March 10, 2020. My wife and I have been his only support, housebound for over 3 and a half years – as of today, thats 1,400 days with one or the other of us with him, 24 hours per day. Our son had been attending a dayhab program since he turned 22 (June 26, 2006). Lack of socialization, and minimal outside stimulation with us all trapped at home has lead to sleeping and eating challenges for him. I lost my job due to COVID and I’ve remained unemployed to be available to act as Matthew’ secondary caregiver to my wife since the beginning of 2021.

Brian L., Chelmsford

My son with autism aged out of school in May of 2022 without a community based day program available. At the time, my husband was undergoing treatment for pancreatic cancer. I had to stop working to care for both of them. My husband died in September of 2022. My son is still waiting for a day program.

Lesley M., Randolph

My daughter, Stephany, turned 21 in November 2021. We have sent packets to at least 10 local services, not one has responded. When I call to ask, I am systematically told that there are still staffing issues and she is still in the pile. This is not only discouraging but detrimental to her overall life. She went from being active on a daily basis to having maybe a couple hours a day of activities mostly in the afternoons.

Linda D., Braintree

My daughter turned 22 last year and aged out of the special education system. There aren’t any day programs available. She has been waiting for over a year. In the meantime, she has regressed. She was admitted to the ER for aggressive behavior. She spent 3 weeks in the ER and another 3 in an impatient hospital. She has also gained a lot of weight due to being inactive. It is so heart-breaking because she is not the same person she was a year ago.

Susan A., Shrewsbury

My 28-year-old son, Ethan, lost his day program at the start of the pandemic. The agency gave up the lease to his site and since then Ethan has been waiting to be invited back to one of their other sites, as promised. Although Ethan has PCA help for part of the day, it is very hard for me to fill his days with meaningful experiences. Caring for him full time at home for nearly four years is taking it’s toll on me physically and he is lonely and miserable.

Maryann H., Malden

My 19-year-old autistic child is waiting for a group home. He struggles with ADLs. We have patched together a few hours of services a week, but they are not nearly enough to help him reach independence skills needed to live on his own. The stress of caring for his needs has burdened my family. My husband works full time, I work as many hours as I can, and we have been going to marriage counseling because of the intense stresses.

Marianne S., Merrimac

My 22-year-old profoundly Autistic grandson is in need of a consistent day program. Last March, he was accepted at a program but due to lack of staffing only goes occasionally. Some weeks, he may get four to six hours spread over two or three days. The next week, zero hours. The loss of continuity is very confusing for him. I know there are hundreds of others dealing with the same issue. Until the pay increases, this problem is going to keep growing.

Nancie L., Northborough

How many of us are are hitting a brick wall or a closed door when it comes to helping our over 22 year olds secure a spot in a day program? How many of us have spent these 22 years juggling advocacy, leadership, full time caregiver, medical professional without the formal title, social/rec/therapeutic/community engagement and events director, while rising from financial and domestic ruin, stabilizing life… “Welcome to Turning 22” and dodging all the potholes and roadblocks? Suddenly finding that there is no ‘fit’ for your beautiful young adult in the world of day programs? Why? We, as a state, need to do better as individuals who require support and medically complex individuals are getting left behind! Unacceptable!

Gayle W., Marshfield

As you read this, more than 3,000 people with intellectual and developmental disabilities (IDD) and autism in Massachusetts are desperately waiting for services. According to a recent Workforce Metrics Survey by the Association of Developmental Disabilities Providers (ADDP), programs like Adult Long-Term Residential, Day Habilitation, Shared Living, and Adult Foster Care have a “24% overall staff vacancy rate.”

When staffing is only at 76%, services cannot be fully implemented, resulting in the long waiting lists and lack of services plaguing our community today.

As advocates for this community, we fear the state government doesn’t fully embrace how urgently change is needed to improve the lives of thousands of people with IDD here in Massachusetts.

Many of you or your loved ones have been placed on disability services waiting lists, despite being deemed eligible by Massachusetts agencies. My own family, having recently settled on the North Shore, continues to struggle with getting any kind of in-home support. With no sign of when those on waiting lists will be served, we need to gather stories of the pain and suffering Massachusetts families are experiencing being unserved or underserved.

There are thousands of you out there and each of you has a story to tell, so please share it with us so we can help the Governor’s office and your state representatives and senators understand and embrace why fully addressing lack of services is urgently needed.

Jose Lopez
Policy Officer