Families that include an adult with a physical or intellectual disability often mark the minutes as happy and the seconds as uneventful. We don’t worry about the small things. We have a very deep well of compassion, understanding and patience that reminds us to celebrate the small events with family and friends.
The 22nd birthday is a milestone in life, usually celebrated with college graduations, parties, independence, career paths, relationships, and strong community ties and support. For our adults with developmental disabilities, it is probably the most challenging birthday they will ever have. It’s the day we parents refer to as “falling off the cliff.”
In Massachusetts, that milestone occurs when adults with developmental disabilities lose access to all the educational and vocational supports they have had since they were 3 years old. For 19 years, our children have been part of a highly individualized system within our public schools designed primarily around a Philosophy of Inclusion. They have participated in training classes, taken field trips, and learned to integrate into various communities. However, when they turn 22, our adults discover that the community in which they have been so active now there is no place for them to prosper. We sat across the table from a state representative, only to hear him say “there are no programs available for your son/daughter.”
We may say they are falling off a cliff, but in reality our adult children are not falling because they are not going anywhere. They sit in our homes, waiting indefinitely for support and services, the opportunity to be part of the familiar community in which they have flourished over the previous decades of their lives.
With nowhere to go, a parent often must stop working and abandon their career to keep their adult child safe and cared for at home. How is this good for our adults, families or society as a whole?
Several failures by the Massachusetts Department of Developmental Services contribute to this. Waiting lists for supports for adults with developmental disabilities are thousands long and the lists are growing every day. Staff turnover is high and existing staff often resist more modern options suggested by parents trying to find alternatives to programs that are obviously not working.
One of the key problems facing families like ours is DDS’s rigid approach to allowing people to exercise what is called self-direction. That is, their right to spend the financial support they receive from DDS on the programs and services they find the best.
The Massachusetts Real Lives Act was passed in 2014 to address this issue. Today, the Commonwealth is still struggling to educate its staff and develop a strong and consistent path for families to use the law. The State does not do what the law requires and, in the meantime, people suffer.
Our son will soon fall off the cliff, and the system of vocational supports and social services for adults with developmental disabilities he is entering is shockingly behind. Life could be so vibrant and have a tremendous positive impact for him and others like him if self-direction was truly embraced as required by the Real Lives law.
With the help of partners in our hometown of Westborough, we established Post 22: Training and Employment for Disabled Adults. It is a startup that works with adults with developmental disabilities to develop for them. Individualized training, internship and paid employment programs. Our community mapping of opportunities within walking distance of Post 22 includes 67 businesses. We contract with nine local companies that provide our adults with competitive and inclusive training, internships and jobs. All of our participants work three to five days a week, gaining healthy experiences and relationships that too often evaporate as soon as they leave the public school system.
Post 22 participants are out in the community every day, surrounded by people who support them and want to be part of their inner circle. They are happy, fulfilled and valued.
Every person approved for DDS support should be able to choose and pay for services like these, whether at Post 22 or any number of exciting, innovative, and horizon-expanding programs in Massachusetts. However, because the Real Lives law remains implemented in a restrictive and unclear manner, these options require private payments and are not available to the vast majority of people who would benefit from them. This, despite research showing that self-directed programming and services lead to better outcomes and higher quality of life.
To give you an idea of the current situation, DDS supports more than 32,000 adults with developmental disabilities. Only about 2,000 of them participate in the self-directed model. Since the self-directed support system is so opaque, confusing and limited, it’s no wonder why. With DDS having a budget of nearly $2.8 billion in fiscal year 2024, we are aggressively advocating for change.
The Commonwealth finally published a new set of regulations on the Real Lives Act at the end of May 2024. The draft regulations, as written, do not do enough to establish standardized, simple guidelines for self-direction. There will be a hearing on these regulations on June 18.
There are wonderful programs, services and opportunities for adults with developmental disabilities. They require a lot of hard work from the people who build them and the people who participate in them. It is time for Massachusetts and the Department of Developmental Services to fully implement the Real Lives law and support self-direction so we can be sure our adult children fly instead of fall.
Christine Simpson is founder of Post 22: Training and Employment for Disabled Adults.
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