“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell


Monday, January 19, 2009

Regulated lives

I have observed a variety of things over the past couple of months that have been very disturbing to me. They relate to the manner in which the lives of adults with intellectual disabilities are "protected" by regulations. In the same manner that a person's life is regulated who is serving time in prison, the lives of adults with intellectual disabilities are regulated lives but they have done nothing wrong. Because the services provided to people in group homes are largely hidden, strange, freedom limiting, things happen. Many of these things happen in the name of protecting the people. So there are many regulations regarding the fingerprinting of people who will come into contact with the residents, where they may go, and who they may go with. State agents who are in charge of regulating the lives of people with intellectual disabilities have complete power over their lives. They determine when they get up in the morning, what they eat, what they do recreationally, who they meet with, when they shower, whether or not they can go outside, when they go to bed and everything else in between.

As I have observed, I note that too many things, too many restrictions of freedom are done for administrative convenience, or just because regulations have been developed that must be followed. These regulations were perhaps developed to protect people but what they end up doing is really, really isolating people. I am involved in the lives of perhaps 50 intellectually disabled adults to a greater or lesser degree on a weekly basis. I can tell you that those who fall under the auspices of state regulations are experiencing isolation and restrictions on basic freedomes as a direct result of governmental regulations that are supposedly there to protect them. In reality, those regulations, although they may provide some protection, regulate people right out of normalcy and right into loneliness and isolation. I used to want to blame uncaring people for not spending time with those who live in institutions, however, I now want to blame social workers, group home regulators, and those who develop restrictive legislation.

The mindset of the supposed helpers is so strange. It is almost assumed that if you want to spend time with a disabled person you are up to no good or that you have some ulterior motive. The system claims to advocate for regular but in reality it is an agent itself of discrimination. I have seen this with a variety of state agencies who claim to be advocates but in reality are controllers. It is as if they want power over intellectually disabled individuals like some benign despots. They also will villify you if you don't agree with them. However, should you want services to be more normalized or for them to spend more money, they will fight you tooth and nail, particularly if it entails they loosing the stranglehold of their power. This tells me what they are really all about. If something is the right thing to do, it is the right thing to do and we figure out how to pay for it. Agencies will argue about whether something is really necessary, unless someone else is paying for it, then they become "advocates." In California, I have seen this between Regional centers and the public schools and the Dept. of Rehabilitation and the Social Security Administration.

The agencies advocate for supports leading to a regular life for an individual if they are supports that someone else will have to pay for, but will fight hard against what is best for a person with a disability if they themselves have to pay for it. In short, they are hypocrites.


I don't know what I need to do next, but I need to do something. I can't be the only one who cares about these issues, who is frustrated by lives regulated by administrative convenience by people who are more interested in their regulations being kept than people living rich lives, filled with friends who are NOT PAID TO BE WITH THEM and experiences. I know and have known so many parents who have been frustrated and spitting mad at the system that supposedly exists to support them and their disabled family member. The answer is obviously not some notion of total openness where anything goes, however, the answer is also not to provide the lives of prison inmates to wonderful people who simply have an intellectual disability.

McNair

9 comments:

Julana said...

This is why there should be more money available to keep people in homes and community--home and community based waivers. So much money in Ohio is tied to the bed rather than the person. People are kept in nursing homes who should be in the community.

Gary Sweeten said...

I am working to develop models for supporting the family of disabled people. Got any insights or research on that focus?

Mark said...

Amen and Amen! Two thoughts: It is certainly easy to advocate for the moon, if you don't have to pay to get there. We struggle in approaching group homes with an invitation to bring their residents to church, with no response. I understand why there might be some level of reasonable questioning of persons wanting to approach group home communities; it is a vulnurable population , to be sure. Still, we are talking about citizens, with the same rights afforded all of us. We seek to serve a segment of the population most severly deprived of basic civil rights. We need lawyers. Lets find some.

CJG 2009 said...

It is interesting take a moment and reflect about what is really going in the lives of adults who have intellectual disabilities. After reading the post, it just seems like people are not being caring. The more time seems to progress and technology gets better the less we seem to care about the people around us. God created every human being that has ever existed and will ever exist. This means that he allows people to be different for a reason, which is mainly so all humans are not carbon copies of each other. God allowed for people to have intellectual disabilities. We should not be allowing for people to be treated so wrongly. The systems seem to want the best as long as it is easy so it does not require too much time or money from them. We would not like our lives being so defined and commanded to. Yet, we allow the government to be so controlling to some of the nicest people that God has ever created. Most people with intellectual disabilities are more caring and loving inside then we can ever try to be. We have a voice and we cannot keep silent. If it were going to be easy everyone would be doing it. Humans need to be willing to step out of their comfort zones and help one another out. I know that I have not done my part in the past, but this knowledge makes me want to do something.

Tara said...

'The mindset of the supposed helpers is so strange. It is almost assumed that if you want to spend time with a disabled person you are up to no good or that you have some ulterior motive. The system claims to advocate for regular but in reality it is an agent itself of discrimination.'

I compleely agree with this statement. I believe that people feel this way due to the fact that it so uncommon to see anyone spending time with a person with any type of special need or disability. Instead of reaching out to those who need us, most of us either wait for someone else to step up, or simply chose to do nothing at all. It is up to each and everyone us, individually, to make a change. We should reach out to others, all others, regardless of their sex, creed, color or disability. Everyone needs to feel loved and supported...valued. It is known that many persons with disabilities are abused and neglected. If there were more people that stepped up, and made an effort to reach out, perhaps even one person might not have to deal with this situation, if even for one day. If we are able to affect the life of even one person, in a positive way, we are making an impact on humanity.

C. Merril Kittelson said...

Regulations are a double edged sword. The most annoying one that I have dealt with recently is related to Job Placement. (I've been a Job Developer/Job Coach for the last 3 years.) I've tried approaching the state of WI to fund job placement for job seekers with developmental disabilities at an ICF/MR. They stated that this is not an "integrated" "competitive" job. Uuuuuugh.

Anonymous said...

I agree no person regardless of the circumstances should not be deprived of enjoying life to its fullest. Even if that means walking outside, going to the mall, or even going to the movies. Disabled people have the rights to choose, if they want to stay up late then let them. They are not criminals serving time and having to live under the watch of guards, they are free human beings. Many peolpe died sacrificing there lives to get the freedom that we deserve, we should enjoy life and be grateful that we have what we have. Life is too short to live it inclosed under strict rules.

Christalle Hart said...

I feel that some level of regulation is necessary in order to provide the basic safety and meet the basic needs of the disabled. Some regulations may be for convenience, but most seem as though they are for safety. Every Tuesday I go to Target and there is a group of 8-10 people with Down’s syndrome. They are accompanied by a few people, most likely from their facility they live at. I think it shows that not all people with disabilities are hidden from society, or locked in their place they live. Also, regarding regulating people that work with those that are disabled; I do believe that fingerprinting and background checks are necessary. When people are working with children and/or disabled people they need show that they are responsible citizens at best. Maybe if the state had more funds they could focus on fun activities in the facilities. Saying that may sound too simple, but a good part of life that people with disabilities are missing the fun activities that other people get to do. If the facilities that provide care for these people had more money, they could hire more people and spend more quality time, versus only providing care.

C. Merrill Kittelson (Ability Ministry) said...

Thank you for this balanced view Christalle! I am now seeing the imnportance of regulation as well. I am doing consulting work for people with DD, PD & Frail Elders. There are a lot of ill-intentioned people out their looking for an "easy job". Backgorund checks are one small way to weed them out. However it almost seems like they are not enough. What we really need is a heart motivation check... so we can make sure that potential caregivers are getting into this line of work... because of their servant's heart... rather than as just a way to pass the time and get a paycheck.