LETTER: Funding Drastically Cut for Man With Disabilities

Dear Big Island Now,

I am his mom. My son is 39 years old. He has been brain damaged since 1979 when he fell victim to an epidemic of spinal meningitis on Kona side. He was three months old when this occurred, and until then he was perfectly healthy. Shea functions at a cognitive level between 6 and 12 months old. He is total care, nonverbal, has a seizure disorder, and is unaware of danger. He requires one on one care at all times, and sometimes even two on one. His grand mal seizures only occur when he is asleep, but other kinds of seizures can plague him throughout the day. He is well known in his community and unknowingly has been a great teacher to those around him. Shea’s needs have not changed, and they will not change for the rest of his life.

I was recently informed by the Department of Health via Department Health Services that Shea’s care is being reduced from 154 hours per week to only 34 hours, total. These 154 hours have been documented, verified, justified, and are absolutely needed.

With the reduction in hours I will not be able to maintain him at home, in his community, or surrounded by those who protect and care for Shea. I am in my 70’s and do not have the stamina nor strength to care for Shea 24 hours of the day.

Especially when considering there is plenty to do separate from direct care. I already handle between 50-100 hours of care monthly; all shopping needs, all bureaucracy matters, and medical needs. I do all 2 on 1 work, all hiring and training of caregivers, and I fill in for absentees. I also do maintenance of home for cleanliness and safety, payroll, and all legal issues. I do not get paid for any of this work, nor do I wish to be.

One of the biggest issues with this drastic reduction in care is that parents were hit with the changes with little time or breathing room to figure out what to do. There are few alternative choices on Big Island with a limited number of foster or group homes. Many individuals with disabilities need specialized care, my son being one of them. Sadly homes that provide this are rare.

I believe the state was slammed with the lack of funding for Medicaid Waiver Service. They moved quickly and as a result made poor choices in dealing with the issue. What does this state believe we are supposed to do? They have not given suggestions or alternative methods of handling this. Whether intended or not, there is a lack of moral directive and accountability. What are we, as parents, to do?

“When everything is subject to money, then the scarcity of money makes everything scarce, including the basis of human life and happiness.” -C. Eisenstein

Sincerely yours,

Honey Burns

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