Becoming More Disabled

Becoming More Disabled

My becoming more disabled at the age of 59 was surprisingly difficult. I have always had significant disabilities due to Cerebral Palsy. I use a powered wheelchair, My speech is hard to understand. I never sit upright in my chair. I always needed assistance in preparing food and cutting it up. My wife has similar disabilities to mine. In the 35 years that we've been married, we've always needed attendants about 10 hours a week for cooking and cleaning. When our son was a baby, we hired help to help feed and bathe him. 

At age 59, my spine started compressing causing me to lose sensation, strength as well as my ability to function independently. I now need assistance getting in and out of my wheelchair, in the bathroom, dressing, feeding, driving my car, etc. Many of my friends need this kind of assistance. As a disability advocate, I've always been a big proponent for good government-subsidized personal assistant services. Yet I wasn't ready for what real dependence on attendants meant. I couldn't get out of bed, or eat when I wanted to eat or go to the bathroom when I needed to. All of this was shocking to me. I felt that I had to learn how to be people with disabilities all over again.

Needing personal assistant services for all my activities of daily living also meant higher expenses and much more management. Before, If an attendant needed time off, it may cause inconvenience for Denise and me, but it was workable. If an attendant was late it might have been aggravating, Now, if an attendant is dela,yed it could be dangerous to my health. I was able to schedule 1 or 2 checks to be sent weekly to my attendants. Needing attendants daily requires a complete payroll be run that includes paying taxes, workers comp, etc. I had to ensure every shift was covered and emergency attendants were available. Managing attendants is a job in itself.

In July 2015, one of my attendants and I went to Washington DC to attend the National Council on Independent Living's conference and to do lobbying on the Hill. My attendant had worked for several years with some people with disabilities. She asked me why my attendants weren't paid through the Regional Center of the East Bay (RCEB). I knew of the RCEB, and I knew they paid for Supportive Living Services, including personal assistant services, for people with developmental disabilities. I also knew that Cerebral Palsy is a developmental disability. It never dawned on me that there are no income or asset limits associated with these services. The application process took about nine months. After I became a client, Denise applied. We now receive personal assistant services 12 to 15 hours a day.

To receive personal assistant services from the Regional Centers, attendants must be employees of an authorized agency. We use Inclusive Community Resources (ICR) which is run and operated by a woman who has Cerebral Palsy. Denise and I still find and vet our attendants. I go with them to ICR to help with the onboarding process, and I submit their time-sheets.

Becoming more disabled showed me that while Social Security is essential, the more critical need is for proper affordable long-term medical expenses including personal assistant services, durable medical equipment, long term therapies, and maintenance drugs. Becoming more disabled has reminded me of how wonderful people are. My attendants have shown me how even the most intimate personal care can be given with dignity and respect. To be truly independent, we have to know when and how and able to depend on others.



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