by Helen Littlejohn
Recently Senator Charles Schumer came to Syracuse to speak at ARC of Onondaga about legislation he is introducing that would force states to comply with placing adult individuals in the least restrictive environment instead of institutional care. In the legislation, it encourages states to release funding to help parents who are caring for their adult children to hire staff and to provide respite.
I applaud his efforts, but it does little to address the growing problem of those of us who are caring for adult children who are severely disabled and need more care than the aging parents can give. Nor does it address the problem of rural areas where staffing, transportation and opportunities for community involvement is minimal at best.
Community based residential services that are more person centered is always welcome. My son currently has a plan that includes staffing during the day to enable him to access the community and to be cared for when my husband and I are at work. However, we are facing issues of living in a rural community where staffing is difficult to find. We have no backup staffing so when the person we hired is ill or needs a day off, it requires my husband or myself to take the day off from work. All this, in addition to the various meetings and appointments our disabled child requires, can really take a bite out of our work time and our budget. I work for an understanding employer but few do.
Also as my husband and I are aging, are faced with diseases (in my case cancer) that could end our lives or disable our abilities to care for our son. What happens to our son at that point?
The bill the Senator Schumer does little to address these issues. NYS has not created any new residential opportunities in group homes since our current Governor took office. I do not consider group homes where 4 individuals live together in a lovely home maintained by a non-profit agency to be an institution but instead an alternative to living with a person’s family who can no longer care for them.
Senator Schumer’s work is good, but let’s not limit opportunities to provide for each and every individual and their families.