My youngest children with disabilities both turned 41 this year. They came to me through the foster care system when they were just babies and because of their disabilities were never adopted. So they have been in my life a long, long time.
It turns out that our world does not really want to spend tax money to take care of severely disabled people, regards them as less than human and would prefer to have them permanently out of sight (which is some cases means dead). This attitude probably comes from the eugenics movement in the early part of the 20th century when there was a belief that people with severe disabilities were the cause of all society's ills and if they were eliminated or locked up, the problems would be solved. So, I have had to fight all kinds of people and systems in order for them to have any kind of life and many times the fights were about life and death. But we've made it this far.
My own belief is that if we as a society are not going to own up to wanting people with disabilities dead and are going to let them live, then we have an obligation to help them have a decent life since as human beings they actually do have many of the same wishes as other humans. I'm not talking about the lap of luxury here but I am talking about a decent place to live, reasonable health care, decent food and clothing, friends and family that care about them, and interesting, productive things to do all day. I believe they should be treated with kindness and understanding.
Both of them live in group homes with roommates and have care staff with them all the time. My son has a part time job at a recycling center and my daughter is a volunteer paper shredder at a local non-profit. For the most part they have pretty good lives. However ever since they've had paid caregivers, I've had problems with the caregivers. Some of the problems were relatively minor - things disappearing from the house, my daughter being dressed in inappropriate clothing, teeth needing to be brushed and so forth. Some of the problems were very serious - injuries, verbal and physical abuse, important doctor appointments missed.
Over time I became aware that the agencies that serve folks like my son and daughter have an awful time finding people to be caregivers. It's not a popular job at all. Plus it pays very, very little and often has no benefits. So the agencies overlook even serious problems if caregivers come to work every day and have some kind of explanation or excuse for the problems. There are also big financial consequences for the agency if they have to let someone go - the agency pays the new person for their time while they're being trained but the agency is not reimbursed for this expense. Plus the agency has to pay another staff to work the shifts vacated by the person they let go - usually this means overtime which they are also not being reimbursed for.
I was very angry for a long time about the poor care my son and daughter seemed to be getting. I blamed the care staff and the agency. A little at a time I tried to open my mind so I could understand what was happening. First of all, I learned what the agencies were up against. Then I took the training that was provided for care staff and learned that it was good training in the philosophy of community living but provided very little in how to care for a person with disabilities on a daily basis.
In the last couple of years I've learned a lot more. I've tried to get to know the people working with my son and daughter. Most of them come from a "poverty culture" which I have had the opportunity to learn about having come across a book on the subject. Many of the things I criticized the care staff for came from the culture they grew up in and that they still live in since most of them are paid $7.40 and hour - not enough to live on. Many of them are uneducated and have many, many family troubles. They are fearful outside of their own neighborhoods and so have a lot of trouble finding any place outside their neighborhoods. The way the dress and eat are very different from what the rest of us do so how they dress and feed my son and daughter reflects their own lives.
I finally decided that what would help the most in getting good care for my son and daughter was to care as much about the well-being of the care staff as I do for my son and daughter. What the care staff lack most is money. So I've been fundraising for a couple of years and I've been able to give them small amounts of cash from time to time. I had a birthday party for myself when I turned 70 and asked people to bring money for what I call the "Integrity Fund" instead of presents. I've had a garage sale. I have a friend that donates her designer clothes which I take to a resale place. When they sell I donate the $ to the Integrity Fund. Sometimes that little bit of cash enables one of the care staff to get gifts for her kids at Christmas or go to the dentist to get an abscessed tooth taken care of.
I actually have seen a difference in the attitudes of the care staff since I've been trying to care about their well-being. They're more friendly to me, of course, but also much more willing to accept my input about care. My next step is to find out what resources are available to them as "working poor." I'm pretty sure there are places that will take care of dental needs, etc. On the other hand, figuring out a way to present this information is going to be tricky because they're proud and don't want to accept "welfare."
At this stage in my life as a long time "do-gooder," I'm thinking that caring for the those who care for my son and daughter is an excellent way to spend my last years. I'm not likely to solve the problem before I check out. The problems have been around for a century or more and are deeply ingrained, so I will be satisfied if I can make a small dent.
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