Living and thriving with dignity

To the editor:

My nephew, Connor, has Friedrich’s ataxia. He was diagnosed at Children’s Hospital of Philadelphia when he was 7 years old.

Friedrich’s ataxia is a degenerative disease of the nervous system. Today, Connor is a student in college. He cannot walk and uses a wheelchair to navigate to classes. Since Friedrich’s ataxia is rare, funds for research are scarce, although progress is being made.

Eventually, Connor will probably need home care to live independently.

It is important to remember that all of us, if we are lucky, will eventually need home care to live independently. Today, 20 percent of state home care positions are unfilled, and the shortage of home care workers will only grow worse if wages stay at current levels.

Low wages and the lack of affordable apartments and health care mean that home care workers themselves cannot live independently. The shortage is dangerous. Older adults and disabled New York residents will go without meals and be forced into nursing homes.

Living independently in America is viewed as living with dignity. Write and call Gov. Kathy Hochul to insist she includes Fair Pay for Home Care in this year’s budget.

Do it for all of us.

Helen Krim