Shortage of home health care aides

This NY Times article discusses the shortage in the context of elder care, not those of us with disabilities who are greatly affected. It points out how some are opting to use the gray market, hiring aides who do not work for agencies due to cost factors. It mentions how often no criminal background checks or proper training is provided to these workers.

Make no mistake about it - this is one of the most important issues facing the disabled community. Without adequate home care, many of us face institutionalization.

I am always reluctant to mix the issues of aging and disability in discussions because there is a tendency on the part of our social system to provide the same services to young people with disabilities as they do to elders, thus making it very difficult for those of us with disabilities to have the ability to participate in any meaningful work, whether it be paid or volunteer, have a social life or any kind of life.

I have experienced this in my own life and have continually struggled against being pigeonholed into the same services designed for an elderly person. For example, when I need meal assistance and someone suggests a service which requires me to be home every day at the same time to receive a meal, that literally puts me under a form of 'house arrest'. I may need the service, but because there is no program for a younger person with a disability, it doesn't work for me.

I have had home health care aides who will not provide me with times when they are coming, but the rule is I have to be home when they come. This also limits my mobility, income and lifestyle greatly. Because of the shortage and the extent of my disability, I sometimes have had to make this compromise. (My primary aide does not treat me this way but she is the exception in this area, not the rule.)

A shortage also results in less bargaining power with aides for consumers and increases abuse. If I want an aide to go to work with me, he or she may turn my hours down and take hours from someone else who requires less assistance. Aides have told me they will do "one thing" (pick from eating, being clean or getting dressed- forget opening mail or anything else)and then have sat down and watched my TV, telling me to "go ahead and work, it won't bother them". ** Some aides have demanded more and more money from consumers. I know of one aide who worked for a friend with MS. She would walk in, open my friend's wallet and take all the cash in it to "supplement" her pay.

So what about finding other kinds of help? Volunteers through social programs will come, but the programs are set up where you have to commit to the same time on the same day - every week since they are also set up for the elderly who are retired. If you're disabled , this means you have to do a workaround all of the time in order to participate in any of these programs, rather than being allowed to work out a schedule with the volunteer on a one to one basis - or give up this volunteer help, which can help supplement the shortage of aides situation.

This is a serious and growing problem for people with disabilities. We can invoke the ADA to increase our access to opportunities, but for those of us dependent on care and aides, this shortage can mean we have no way to get dressed, eat or showered - and will keep us in our homes or, worse yet, put us in institutions.

**Descriptions of these situations are to show the kinds of behavior I've seen and are not meant to imply that either I, or anyone else, should put up with it or settle for this kind of treatment because there is a shortage.