Quite often, when curebies criticize autistic advocates’ position on autistics’ care or cure needs, they not only resort to personal attacks rather than attacking the person’s opinion, but they do so in a blatantly false way. For example, they decide that the (“low-functioning”) autistic advocate who claims to be getting 24-hour care and still not wanting to be cured, doesn’t really get 24-hour care, so they are not like the curebie’s child. Just so that all the curebies in the world don’t get their expectations sky high and need to deal with disappointments once they’re trying to place their adult child: a care facility, group home or supported living place is *not* like a family.
In a family, 24-hour care for a special needs child is often taken quite literally, in that the parents will be around whenever the child is not at school or daycare. Unless they have an extremely large family, it is also one couple of parents to two or three children, which is far less than the ten to fifteen common in residential care. Of course, all parents should set time aside for themselves, and most do this, but generally speaking a special needs child whose parents say needs round-the-clock care, will get close to that. A full-time job being a Mom, in this respect, can be said to be pretty close to 168 hours a week. Of course, this is extremely hard on some parents, but it is a fact of life that comes with parenting some severely disabled special needs children. I believe the parents who say that their child gets 24-hour care and mean this, but I want to tell them all: this is not what your child’s adult services will be like.
After all, a 168-hour-a-week job is emphatically not a fact of life in the field of professional care. In the Netherlands, most healthcare labor contracts have a 36-hour full-time workweek, and there are a significant number of part-time employees in this field. Also, disabled people are put in group homes of ten to fifteen residents in many cases of high care needs. And there will never be ten to fifteen nurses running around the house round-the-clock to provide care! In total the team may consist of that number of staff members (my current ward’s team consits of I think twelve nurses, and due to staff shortage we’re now temporarily down to ten beds from sixteen), but remember they all work at most 36 hours a week. At my current ward, there are two or three nurses on the day shifts and two on the night shift. This is 24-hour care, on a locked ward so patients have a serious mental illness. At the resocialization ward which I’ll finally move to this Monday, there are two nurses during the day and one at night, and there are fourteen patients plus a few who get day treatment. It is still 24-hour care. Even on “intensive care” wards, there are usually about four nurses during the day (and two at night) for sixteen patients – and remember, this type of ward is generally only for crisis intervention, not for long-term stay.
You’d think in developmental disabilities your child would have it better care-wise than in mental health? Think again. I was astonished when I watched a documentary a while back that described a locked long-term living facility for people with mild intellectual impairments and extreme behavioral problems, some of whom had been placed through the justice system for violent crimes. Most needed constant supervision to guarantee their safety. And if you think that’s what they got, you’re wrong: there were, during the day, four support workers to twenty-four residents, and the agency still needs to cut its budget.
Some parents believe that their child will need one-on-one care when he’s an adult. Don’t think he’ll ever get it. I was just reading about a living facility for severely intellectually disabled people with behavior problems. Most of the residents need “hand-in-hand” assistance, which means a support worker will have to guide them through each and every activity. There were ten people in the facility, but only two or three carers during the day and one at night.
How come people are classified as needing “intensive care”, “one-on-one care” or “constant supervision”, and still get put into facilities that lack the personnel to actually provide this support? It’s pretty simple: assistance with “each and every activity” generally refers to only the activities found to be important, such as getting bathed or dressed, having food, etc. The people in the severely intellctually disabled with behavior problems home were mostly “supported in their rooms” and “the concept of ‘group’ has been abandoned entirely, because these people cannot function in a group”. In the facility the documentary was about, residents were locked up in their rooms when a support worker couldn’t attend to them. I’m afraid the same happens at this other facility. Of course the residents get “24-hour care”: they will be helped with each and every daily living activity. But of course in your life, not all of your time is taken up getting your child dressed, bathing and feeding him and doing other such activities, and maybe your child would have far less behavioral difficulty if you just locked him into his room for most of the day. Good for you if you don’t think it is ethical to lock up a person into his room or to deprive him of most opportunities to socialize or do leisure activities, but the agencies who will fund your adult child’s care facility, disagree. A reason for “cure”? No, a reason for strong activism for better care.