Monday, June 25, 2007

Lumping together elder care and people with disabilities: a poor fit

At my parish , there is a caregivers group. It focuses mostly on caregiving of parents, although all are welcome. I spoke to the group on issues they face with elderly caregiving and shared some of my experiences as a person who both has a personal assistant and an aging parent.

One thing became massively clear to me: the issues concerning elder care very significantly from those facing people with disabilities who need the services of a PA. I really felt, which I relayed later on to the woman running the group, that there were others better qualified to talk about elder care. I gave her a few names of folks who work in the field.

Our social programs have tended to lump together the services for both elders and disabled folks. It is more cost effective to do so. But it's incongruent. Services geared toward the elderly fulfill different needs than those created for people with disabilities. Our needs are different. Yet we still put seniors and the disabled together in federal housing, meal programs, transportation services and the like.

This has stalled progress in many areas for people with disabilities since, aside from the personal assistant care programs, we lack social programs designed for their needs. At present, a social worker writes down that you're receiving services from such and such a program for seniors. Whether those services meet your needs or not, it's on paper and that goes to decrease the hours you may receive from a PA. Worse yet, if you "complain" that the services don't meet your needs, the pen comes out and you're deemed "noncompliant." The prevailing thought seems to be that you're turning down help and assistance if you point out that the elder service organizations don't meet your needs.

The head of one local organization run for the aged really got perturbed at me when I explained that their services didn't match my needs. The woman began to argue with me, telling me that they "help other young people with disabilities too". I told her that every time I asked for help, she told me it was something they didn't do . Yet even though I received no services from them, they would call and insist I be home to accept a "senior package" which contained items for seniors or a visit or some such thing. They never came when scheduled but would call and reschedule more times that I had to be home for these things, telling me "they" were busy. Whenever this happened I would look down at my stack of work and sigh. I asked her if she could just take me off the list for the packages, etc. and she adamantly refused, saying it would cause them too much work to "treat me differently". She just couldn't see things from my point of view- and ended the conversation by saying I would be struck off the list if I couldn't go along with the packages. That was fine with me! Clearly I had become the noncompliant patient to her.

There is a vast difference between a medical model of care and a consumer model, which disability advocates have fought for and incorporated in personal assistant/independent living programs. A medical model of care sees the recipient as a passive participant. Think of a nursing home situation where others run the schedule and tell the patient what his/her needs are. Compliance is the goal along with efficiency. This model is behind most elder care services to date. (I bet there are lots of seniors who don't like it either.) They tailor their services and you receive them. You have no input into them.

In a consumer model of care which is used in the Personal Assistant Program I am in, the (disabled) consumer is empowered to direct his/her own care. There is a structure in which an evaluation is done and a task list is drawn up, but within those guidelines a consumer acts as the employer of the personal assistant and directs the care.

You can see the vast difference in these approaches. Supplementing hours to a personal assistant program with services from a medical model just doesn't fit. There are legitimately different needs for seniors and disabled people and services designed for the elderly should not be forced upon people with disabiliities when they are inappropriate.


Anonymous said...

I run a senior program. When people like you come along it's hard because you don't get that we aren't set up for disabled people at all. Remember too that we are forced to take you on. I do what I can with what I have and my goal is to get home to my family by 4:30 p.m. every night with my meager paycheck.

Let's be blunt here since you're putting this out in public: what do you really expect to do with your life as a quadriplegic? Not much I expect .

I'm sick and tired of trying to fit in folks who don't fit in my programs.

goldchair said...

I believe we all benefit from different points of view. However I think we need to respect each other's cultural differences.

Those of us with disabilities (and our allies) don't necessarily judge a person's worth based on his/her productivity level, as you suggest. That's a concept that is derived from a Darwinistic,survival of the fittest point of view. In following through with that, a person doesn't have to "earn" the right to quality of life or care that is given in a respectful and dignified way.

I'll refrain from speculating on what personal issues would cause you to be so "blunt".

Anonymous said...

...what do you really expect to do with your life as a quadriplegic?

Well, Ruth, the commenter's question is way easier to answer than your questions about changing a flawed system arising from flawed cultural perspectives. So, I'll decide to answer that question...

Ruth is changing the world.

And, come to think of it, that's the answer to your bigger questions, too. One person at a time, we try to make things better.


betterolls said...

As Ruth describes, very often the first reaction to any complaints about the status quo is to see the disabled person as the problem. As long as people who run the service organizations get away with that, we're handing over the power . I write letters and make calls when this happens to me. If enough of us did that it would give more credibility to a single person's so called complaint.

Anonymous said...

Connecting this to recent problems that we have had with accessible transportation services...

It seems that the first comment reflects so much of the challenge facing our society. Those providing necessary services are often overwhelmed/underpaid/self-focused/weary. And, most importantly they buy into the cultural belief system that what they are doing is charity.

We need a paradigm shift. Services provided are justice, not charity. When a group is oppressed, discriminated against, dismissed, undervalued, blamed, and on and on, the only fair and just answer is to change. The services asked for need to be recognized as what they are - justice, not charity.


Aaron Marks said...

Wow! Thank you! You're very right. Just because someone is older and less able to do things for themselves does not mean that they're completely disabled.

Never That Easy said...

I've come up against this again and again - trying to squeeze myself into the services that are available in my community. They are clearly meant for the elderly, with the disabled added on as an afterthought. Housing presents a similiar problem. I think what you are saying, Ruth, is that this is where the change needs to take place - we are not an afterthought, something to be 'fit in' to the meager budgets.

Given the bluntness of the first commenter, I want you to know just how much you are doing with your life. Carelessness and cruelty can still wound, anonymous or not.

Ruth said...

Great discussion. Thanks for the supportive comments - appreciate it.

Janet- seeing services as justice, not charity is an important point. As long as we are seen as charity cases, services will never result in or even approach leveling playing fields so pwd can get transportation, employment, housing, etc. One young man I knew had to leave college not because of his grades but because when he hired people through an aide program to take him to class, most failed to show up regularly. He told me they felt they could just show up whenever they felt like it even though their specific job was to take him to class. He lost his scholarship.

Which brings us to your point, Never That Easy, about how services that fit the elderly don't fit the needs of disabled. It needs to change.