My son and I moved to Hawai`i from the mainland, and upon arrival I knew I needed to find resources for services, but where should I look?
I called the general information number for the State and described my son’s needs and was given the number for the Department of Human Services (DHS), who in turn, referred me to the Department of Health’s (DOH) Developmental Disabilities Division (DDD). We then immediately pursued getting a case manager (CM) with the DOH DDD and Tom began attending an adult program with an agency.
For two years everything went fairly well until I lost my job, as the company was moving part of their operation off island, and since there were no services for Tom on Kaua`i, I could not go with them. When I went back out looking for work, I could not find employment that fit with Tom’s schedule. At that time, Tom’s agency case manager told us about a state program that paid for chore services, we were registered, and I was paid minimum wage for taking care of Tom’s home, cleaning, cooking, doing laundry and running errands for him. For the next four years, we maintained a very meager lifestyle.
At the same time, I also contacted the State Council on Developmental Disabilities (DD Council) for information. Through the DD Council I learned of a policy that was being considered that would allow parents of adult children to be paid as a Personal Assistant (PA) for their adult child. I closely followed the policy development, and the day after the policy was implemented, I contacted our DOH CM and told him that I wanted to become my son’s PA. Our CM referred me to an agency and I went through the hiring process within one week. The problem of my finding employment in the public sector had been resolved.
Once we were in “The Waiver” and I became my son’s PA, we went from a very meager lifestyle to one that allows Tom to enjoy some recreational entertainment. The services I provide were written into my son’s Individual Service Plan (ISP), and instead of strangers coming into our home and providing services, I can now be paid to make sure my son is receiving the best care possible. Not only am I employed full time, I also have a 401(k) plan as well as health care, including medical, vision and dental that are provided by the agency. As my son Tom says, “Now we have a life!”
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