“Hello, this is Matthew calling,” said the phone message “I want to talk to my mother about something. Mom? Are you there? Mom?”
Matthew, who has autism, is my son. He was 23 at the time of that phone call and living in a supported living program near Santa Cruz, California, about an hour south of our home near San Francisco.
“My stomach is a problem,” he told me when I called him back, “and I probably have serious diarrhea with all that blood.” After probing a little, I learned that he’d been in pain for a week with what turned out to be a flare-up of colitis, a condition he’s had since childhood. My mind raced.
The last time this happened, Matthew was a teenager, and was still eligible to see his pediatric gastroenterologist. Not any more…
Matthew’s caregivers were surprised. He never mentioned his stomachache, though he had been more mellow than usual.
When I picked up Matthew a few hours later, his condition had worsened. He looked visibly thinner since his last visit home only 10 days earlier, his eyes were half masked and he was scary pale.
I took him to the Emergency Room and helped doctors and nurses communicate with him.
“How can I help you today?” the triage nurse asked.
“Help me do what?”
“What is your pain on a 1-10 scale?”
“What do you mean?” Matthew answered, rocking anxiously, “Can you ask my mother?”
Matthew was admitted, and while the staff were competent and kind, it was clear that they had little experience with patients like my son. I stayed in the room with him during his stay, and for another hospitalization a year later. It was clear I needed to, and the staff seemed to appreciate my help, but I wondered…
Shouldn’t the medical community be trained to treat people with developmental disabilities like Matthew?
Fortunately, I was not the first person who felt this way, and 5 years after Matthew’s visit to the ER, the healthcare community is evolving and becoming a friendlier environment for people with developmental disabilities and their families.
The Special Hope Foundation is proud (very proud) to be a part of this change, funding programs that promote the establishment of comprehensive health care for adults with developmental disabilities designed to address their unique and fundamental needs. Training, yes, but also:
1) Clinics, like The Achievable Clinic in Culver City, California. The clinic is a community health center developed to provide culturally appropriate, coordinated, high quality and comprehensive primary and specialty care services in a medical home setting for individuals with developmental disabilities. Read more here.
2) Toolkits that help adults with disabilities find appropriate health care, like the one developed by the Vanderbilt Kennedy center. Read more here.
The Autistic Self Advocacy Network has also created a series of toolkits, including one for self-advocates on healthcare and the transition to adulthood. Read more here.
3) Programs that improve health outcomes for people with developmental disabilities across the lifespan, like UCSF’s Office of Developmental Primary Care. Read more here.
4) Health Assessments for people with developmental disabilities. Such an assessment might have kept my son out of the hospital in the first place. The Special Hope Foundation provided a grant to The University of Rochester and The Special Olympics of NY, who will collaborate to implement and test a Team Trainer Program, where health care students will be partnered with Special Olympic athletic teams to increase athletes’ participation in health care screenings, support coaches, facilitate follow-up care with healthcare providers, and incorporate health and wellness activities into team trainings.
5) Developmental Disability 101 conferences for the medical community. UCSF’s 14th Annual Conference is coming up in March. Matthew Holder, the President of AADMD, who also has an annual conference, is one of the speakers. He will no doubt talk about the Lee Specialty Clinic, which was recently featured in the New York Times.
6) Student Training, so many great new programs, including the following:
Westchester Institute for Human Development
I’m just getting started. Stay tuned to the Special Hope Foundation Blog, where I will be profiling more of the people, places and partners that are helping the medical community provide healthcare to people with disabilities, and helping people with disabilities advocate for themselves.
In case you wondered, Matthew is doing very well, and his ulcerative colitis appears to be in remission, thanks to his current treatment regimen and his doctor, who didn’t “get” Matthew at all at first, but now he does little bit. Isn’t that great?