Decades of single decisions leads to assisted living for my adult disabled son.
Reaction to the U.S. Department of Justice’s June 18th letter by Ritchie Torres (NY-15) by Yvonne Stevens. This contents of the letter could seriously and negatively impact the future of disability rights and access
When Robert was six years old, we made one of the most heartbreaking decisions of our lives.
My oldest son was born with an intellectual disability. Following the advice of our pediatricians and after many painful discussions with our family, we placed him in an institution. He lived there for seven years, from the age of six until he was thirteen.
No parent ever anticipates having to make that choice. At the time, there were very few alternatives, and we truly believed we were doing what was best for him.
In the early 1980s, Oklahoma had three state institutions for individuals with developmental disabilities: Pauls Valley, Enid, and Hissom Memorial Center in Sand Springs. Hissom was the closest to our family, allowing us to visit Robert as often as we could. He entered Hissom in June 1981 and remained there until the fall of 1988, when he left as a result of the landmark Homeward Bound v. Hissom Memorial Center lawsuit (Case No. 85-C-437-E, N.D. Oklahoma). Hissom itself continued operating until it officially closed in April 1994.
I have lived long enough to witness tremendous progress. I have watched our country move away from large institutions and toward community living. In individual homes, people with disabilities can live fuller, richer lives while receiving the support they need. Families like mine spent years advocating, educating, and refusing to give up until those changes became reality.
Disability rights are not political to me. They are deeply personal.
They are my son’s life.
They are every battle we fought, every tear we cried, every victory we celebrated, and every ounce of hope we held onto for his future.
As a mother who has walked this journey for fifty-one years, I hope we never forget how far we’ve come or why we fought so hard to get here.
As I listened to the news about the U.S. Department of Justice’s June 18 letter that could impact the future of disability rights and access to community-based services.
That is why today’s discussions about returning to institutional care are so concerning to me. I worry about what could happen if we begin moving backward instead of forward. I worry for Robert and for the thousands of individuals and families who depend on community-based services every single day.
Over those five decades, through both heartbreak and success, I have gained wisdom that I hope can help other parents who may just be beginning this journey.
The first thing I would tell any parent is this: educate yourself. Learn everything you can about the resources available in your community. Talk with your pediatrician, family physician, school counselors, your state’s Department of Human Services, DDSD staff, family members, friends, and other parents. These professionals often know about services and opportunities that you may never discover on your own.
3 Steps in choosing a provider for your adult child with disabilities
- Educate yourself. Learn everything you can about the resources available in your community. Talk with your pediatrician, family physician, school counselors, your state’s Department of Human Services, U.S. Department of Human Services, family members, friends, and other parents. These professionals often know about services and opportunities that you may never discover on your own.
- Seek advice from other professionals as well. Physical therapists, occupational therapists, speech therapists, recreational therapists, behavioral specialists, psychologists, and social workers often have valuable insight into which agencies consistently provide quality care and which one’s struggle to meet their clients’ needs.
- Take your time choosing the agency or provider that will care for your child. Trust is everything. Robert has received services through several different agencies over the years. Like any organization, each had strengths and weaknesses. We stayed with one agency for eighteen years, and we have now been with our current agency for the past two years. Every time we made a change, I hoped I had found the right place where Robert would be safe, respected, and cared for. This is all important as I grow older. There will come a day when I can no longer carry every responsibility myself.
4 Questions that must be asked when considering assisted living for my adult child with disabilities
- How long have they been in business? Not that new companies automatically are disreputable. However, they have little track record from which to examine.
- What is the employee turn-over? Obviously, a frequent turn-over reflects problems behind the scene. Long-term staff often tell you a great deal about an organization. It usually means the employees feel valued, and more importantly, that they build lasting relationships with the people they serve.
- What staff training do they require? Ask about staff training. Do they provide meaningful, ongoing education, or do employees simply complete the minimum state-required training before being assigned to care for vulnerable individuals? Well-trained, compassionate staff make all the difference
in the quality of care your loved one receives.
You must ride the waves of this journey.
Some waves will knock you down.
Others will gently
carry you farther than you ever imagined possible.
Keep learning.
Keep advocating.
Keep asking questions.
Keep believing in your child.
The waves may never stop, but over time you become
stronger, wiser, and better able to navigate them.
If you are the parent of a child with a disability,
know that you are not alone.
Whether you’re just beginning to explore services for your child or you’ve been navigating this journey for years, I’d love to hear your story. Share your experiences, questions, or advice in the comments. Your story may become the encouragement another family desperately needs today.
If this article gave you hope or practical direction, consider sharing it with another parent or caregiver who is facing difficult decisions. Together, we can help one another persevere—one family, one challenge, and one victory at a time.
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