New councilor has personal stake in advocacy
Staff writer
The Kansas Council on Developmental Disabilities has a new member with special insights into the issues it addresses.
Twenty-two-year-old Peabody resident Perri Spencer was named by Governor Laura Kelly to the 22-member council earlier this month.
“I have autism as well, and it’s very important to me because it’s very important that people get that support, especially people who need way more help than me — and right now that’s not happening, especially in rural communities,” Spencer said.
Spencer will advocate both for people who have developmental disabilities and for people with mental illnesses, especially those who fit both categories.
He has been assigned to a specific area for advocacy.
“I’m part of the behavioral health work group that is trying to increase services and support for people with intellectual and developmental disabilities,” Spencer said.
The council has been working on more funding for home care for people for intellectual and developmental disabilities.
“That’s where the funding is needed,” Spencer said.
Although the state has home care, few services are in rural Kansas.
“Those providers are in larger communities,” Spencer said.
The shortage of providers is not merely in Kansas. It’s nationwide, Spencer said.
“The waiting list for services is way long,” he said. “I personally have been waiting for services for three years.”
He expects to wait longer.
He also wants to make the national 988 suicide line more accessible to people with intellectual disabilities.
Spencer has worked for two organizations that provide home and group services. He spent 1½ years working in the field. The work isn’t easy, and employee burnout is high, Spencer said.
In training for the jobs, he had to learned CPR, crisis de-escalation, and nonviolent crisis intervention.
He also had to learn to administer medications such as insulin and seizure medications.
“I was really well-liked at my job and very good at my job,” he said.
But liking a high-stress job and being good at it doesn’t mean an employee can sustain it.
“I’ve been hospitalized for mental health concerns as a result of doing that work, so I had to stop,” Spencer said.
Before being appointed to the council, advocacy work took Spencer to the District of Columbia more than once. It will take him there again for three days in October.
When he grew up in Peabody, not much was known about autism, he said. He wasn’t diagnosed until he was 17.
“The other kids would make fun of me, and I didn’t know they were making fun,” he said. “I think the reason I wasn’t caught earlier is because the teachers didn’t know much about developmental disabilities.”
Early intervention makes a big difference.
“If they get therapy, they all have better outcomes,” Spencer said.
His work will involve attending quarterly meetings as well as other duties.
“My biggest goal for being on the council is to get more funding for the intellectual and developmental disability wait list for services and shorten the wait list,” Spencer said. “About 3,800 people waiting for services.
“There’s a huge burden on families,” he said. “People are without good families if they are in foster care. People without families could die without services. If you can’t cook, and don’t live with someone who cooks for you, you could become severely malnourished.”
Disabled children may suffer in foster care because foster parents often are looking for a specific type of child, he said.
“Often they don’t want to or cannot deal with that high level of needs,” Spencer said.
Council members are appointed by the governor and must meet specific state and federal requirements that shape the council’s composition.
At least 60% of members are people with developmental disabilities or who have family members with such conditions. Remaining members often represent state agencies.
All members serve as volunteers and are selected for their passion and commitment to advancing self-determination, inclusion, and community integration for people with disabilities.