SAN JOSE, Calif. — When Christopher McGeever was 22, he aged out of the educational services available to him and needed to enroll in another program for adults with disabilities. There are several daytime caregiving facilities in the San Jose community where he lives. But when his mother, Laura, called to enroll him, many said, “No.”

Even though they were designed to care for adults with disabilities like McGeever, who lives with cerebral palsy and is nonverbal, the programs didn’t want to accommodate someone with a feeding tube or provide one-on-one support.

“Some of the day programs make an active decision not to have people with feeding tubes,” Laura McGeever said, also noting that a program Christopher was in later decided to no longer accept his health care plan. “If the provider doesn’t feel like it, then they don’t need to accept you.”

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Adults with disabilities no longer qualify for the same care, services and programs that they did as children. Instead, youth who turn 18 and their families must tackle a long checklist of tasks that include moving from pediatric to adult health care specialists, finding employment or day programs, and figuring out living arrangements. Finding group homes that treat adults with disabilities well can be a challenge, and many disability advocates argue that there should be more resources to help people with disabilities remain in their communities.

For many young people with disabilities and their caregivers, this transition period is a struggle exacerbated by disjointed health care and social service systems, gaps in information and a lack of support. Yet with knowledge of the right resources and time set aside to plan, this transition becomes more manageable. Parents and adolescents can benefit especially from support groups, which help them feel less alone going through this process.

Self-advocacy as a part of growing up

In California, several nonprofit and community organizations work to help parents teach their kids with disabilities and complex health needs how to advocate for themselves as they enter adulthood. The San Jose-based Parents Helpings Parents, for instance, has a Connections California program to assist parents across the state in preparing their kids for this transition. They also host events for young people with disabilities.

“Our goal is to introduce transition to adulthood early and often to all who want to learn, so that parents will ask specific questions (and) teach self-advocacy and self-determination skills from the start,” said Alyssa DiFilippo, Parents Helping Parents’ strategic projects manager.

Connections California presentations include tips on how to teach kids to speak up for themselves and request the support they need to succeed at home, in school, at work and in the community. What this looks like for each child varies depending on their health conditions and disabilities.

For Amy Parham’s 19-year-old daughter, Ava, self-advocacy means setting boundaries around people she allows in her personal space and who touch her. Ava, who lives with Down syndrome and autism, has been taught the Circles curriculum, which allows her to point to a color if she feels uncomfortable or unsafe around someone. She uses this in school, such as to indicate who’s allowed to bring her to the bathroom.

“There is a little bit of a force field around her, where she doesn’t want people to be in that space unless you are an approved member of Team Ava,” said Parham, a marketing manager at Parents Helping Parents.

Self-advocacy resources like this one compiled by Disability Rights California can also help. For those who require legal assistance, the organization also has a legal advocacy unit to help people with disabilities fight for their rights.

Some topics, such as abuse in licensed care facilities and community settings, may be hard to stomach but are important to learn about, said Maria Garcia, who led a Disability Rights California webinar. Learning about adult protective services and other forms of support can help keep adults with disabilities safe from abuse and neglect, Garcia said.

Planning for health care transitions

Dr. Patience White is a pediatric rheumatologist and co-director of Got Transition, a national resource center that focuses on the shift from pediatric to adult health care. For decades she has found that, when adolescents with disabilities are included in health care decisions (when they are able to participate), their transition to adult care is easier.

“There should be a tremendous (effort) to work with young people, so they can make their own decisions and can manage their health care,” Dr. White said. “They have preferences, they have requests, and in the long run, their parents aren’t going to be there.”

Got Transition has a toolkit for young people with disabilities and complex health conditions to help them work through decision-making with their families. They can also take an online quiz to see if they are ready for the transition from pediatric to adult health care.

For young people and their families looking for practical advice on how to transition to adult health care, turning to health condition-focused foundations and groups may be useful. Some of these organizations have local chapters, such as those for diabetes and cystic fibrosis.

More than a decade after being diagnosed with Type 1 diabetes as a teenager, Niketa Calame-Harris found resources and a community of people like her through the American Diabetes Association’s Southern California chapter. She learned, for instance, how to instruct her doctor on the right language to use when requesting insurance approval for life-saving devices such as glucose monitors.

“Living with a condition that’s a 24/7 monitoring thing, where one move could set you on a good day or one move could put you in (the emergency room) every single day is scary,” said Calame-Harris, now chair of her chapter’s advocacy committee.

Having a mentor with the same condition also helped Ashley Wilson, who was diagnosed with cystic fibrosis at birth, and has diabetes and liver disease as a result of her condition. When she was 19, Wilson — now 26 and living in Los Angeles — started to transition from pediatric to adult specialists.

Wilson needed a team of doctors to help manage her health. She liked the adult specialists helping her manage her liver and endocrine issues, but not her pulmonary care team. Her mentor told her she needed to do what was best for her mental and physical health.

Drawing courage from her mentor’s guidance, Wilson found new pulmonary care specialists. The experience taught her the importance of speaking up for herself, even if it feels scary.

“You cannot worry about pleasing others,” Wilson said. “You have to prioritize yourself.”

Laura McGeever also had a difficult time finding the right health specialists for Christopher, now 32, including dentists through California’s safety-net dental insurance program, Denti-Cal.

“None of the doctors were qualified to take care of my son because he needs to have sedation dentistry when he is getting X-rays and dental work,” she said. San Andreas Regional Center eventually helped connect her to a qualified professional.

In addition to health care, it is important to check that a living situation for a young adult with disabilities is a good fit. Every 90 days, Laura and Christopher McGeever meet with his group home team. While Laura McGeever makes decisions about her son’s care in the group home and his medical care, she also pays attention to whether or not he is happy. At the group home, she encouraged his team to allow him to help care for the garden, which gives him an opportunity to socialize.

“We told him his whole life that when his younger sister went off to college, he would get a chance to be in a home of his own,” she said. “My son is just happy to be with (people), so he helps with all (the home’s) chores, doing the garbage, doing the gardening.”

This story was produced in collaboration with the California Health Report.

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