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

Thursday, September 17, 2009

Responsibility of disability professionals

In the last year or so, I have done several presentations to teachers groups and human service provider groups. The presentation has been very well received, and will probably become an article someday...

The idea is that when professionals look at the lives of people with disabilities, particularly special education professionals, they tend to look for 3 outcomes that they are attempting to facilitate. The first is a job that either provides a decent wage, or at least allows the worker the opportunity to contribute to the community through some form of useful service. The second is a place to live that is safe and allows access to the things of life that the individual wants to have access to. These two outcomes are what agencies are most typically interested in facilitating. Organizations are characterized as successful or unsuccessful on the basis of their success or lack thereof in these two areas. However, the third outcome that is desired issatisfying social relationships. That those with disabilities have the ability to choose the people they would desire to be with and that they could maintain contact with family and friends. Ultimately that they would develop a personal, social network.

I then tell the audience that if I was to ask you, "What is the most important thing in your life?" and you responded by talking about your job or your house, most of society would think that is pretty sad. You see the most important thing is the people in our lives be they friends, family, coworkers, etc. Relationships are the most important of the 3 outcomes. However, facilitating, helping to develop relationships and to maintain existing relationships are largely not on the radar screen of those who are working in human services. In fact many programs deliberately prevent the development of social relationships in the name of "protecting" those who have disablities.

My wife and I spend time with friends of ours who are adults with intellectual disabilities who live in group homes. The group homes we are involved with happen to be very good ones as those types of settings go. However, I will tell you that the regulations placed upon those who run those homes just about make them into a prison for those who live there. They experience group regulation, and the owners are so afraid of those from licensing, that they fear to allow their residents access to the community because of fines, losing their license, etc. I have shared the following story elsewhere in this blog, however, it bears repeating.

In order for me to have a friendship with the men who live in the home, I have to be fingerprinted. Now trust me, I recognize that this is done only to protect the adults from potential abuse, but just step back and realize that in order for a man living in a group home to have a friendship with someone from the community, someone who is not paid to be with him, that individual has to pay 60-80$. In my case, it was 61$ that was paid in order for me to be able to develop a friendship with 5 men who were living in a home in the community but who were totally socially isolated. When the regulatory folks found out about me, the reviewed the report done by the local police and fined the group home $500 because one of the addresses was wrong (the report was sent to me instead of being sent directly to the group home). I then had to be re-finger printed in order to have access to my friends there. So in the end, it cost a typical person from the community $620 to have a friendship with 5 socially isolated adults with intellectual disabilities. But that isn't the end of it. I will sometimes take a couple of the men to my university, where they are taken out to dinner by students, interviewed, and then finish out the evening with me at Starbucks. Rather than celebrating the fact that a local university professor took an interest in socially isolated people, the group home owner was once again warned about the "inappropriateness" of these individuals going to a university class. In the end, threats were given, and only the member of the home who has the intellectual ability to lie, has been given the opportunity to attend the university with me. When asked by the social workers whether she went out to the university, she responds "No" and they leave her alone. The men when asked, would talk about the people they met, the food they ate, the great cup of coffee they drank and as a result of that, the group home owner was threatened and they can no longer go with me.

Of course all this is frustrating. But the point of this rant is to encourage disability professionals to become involved in the lives of persons with disabilities for at least 2 reasons.

First, if professionals are not involved in these lives who will be? Professionals need to set the example for the larger community with their own personal lives. I tell audiences that I am proud of the fact that my children (now adults) know the names of perhaps 50 adults with intellectual disabilities, because they have been in my home. I don't just expect others to be integrated with people with various disabilities, I try to recruit them into my own life. I do that because they are people worthy of knowing, worthy of friendship. I give them the choice of having a friendship with me, and sadly they always say "Yes". It is sad because I may be their only choice for friendship with a person who is not regulated like them, or is not paid to be with them. In many ways I am a very rare individual in their lives if only for those characteristics.

Second, professionals need to be involved because the more they are the more they will experience the kinds of frustrations that I have experienced over the years. It is the professionals who have the ability to make changes in the way services are provided. They have the ability to advocate for people who often don't even realize that they are experiencing discrimination and are having their rights abridged. The fact that things are the way they are is sufficient evidence for me that professionals have not involved people with disabilitie in their personal lives because if they had, they would be much less satisfied with the services they are providing. I wonder what it will take to wake professionals to their responsibility to those they have devoted their lives to professionally.



Mark said...

This morning I asked my group of transition special education students (7 of 13 are 21 years old, participating in their last year of public education,the rest have 2, 2 1/2, 3 years..) "What was the best day you ever had?" Some spoke of trips to 6 Flags (they are fearles!), Disneyland, work experiences, Summer Camp, etc. They didn't talk about time with friends or people they loved.

One of my youngest, 17, said, poignantly, "I don't have a best day." He'd been to Disneyland, camp , has had work experiences and is a very outgoing, likable young man... He said all those things were "OK."

I asked him what a "best day" would look like. He said "Maybe someday my family will call my group home and say it's ok for me to come home." They are "around" but he hasn't seen family in years.

His group home is "not bad",by comparison to some others I know, but it's tough, tough residents, even in a great neighborhood; home and school are about all these young men have.

Its a pity everyone they know gets paid to be in their life. I offered to visit, fingerprinted to tha gills, its still "inappropriate" for me to mix professional and social relationships.



Anonymous said...

A worthy rant, McNair. The 'professional' circles I travel in DO form long and mutually satisfying relationships with their 'clients' and the clients' families. Perhaps not often enough to quote significant stats, but I have seen it happen many times and have those relationships myself.

Inasmuch as group homes are regulated to the point of limiting the social interaction of the residents, the group home 'movement' was in response to large group institutions where social interaction was even more severely limited.

As we (you, me, your readers) move along in the river current of societal change, the ocean of complete or best social services may be beyond our careers or influence.

A place to call home after leaving our parents for adult life is basic to community socialization. I still think the agencies that support housing and earned income opportunities (very important for socialization) are still needed.

Thank you for this post. I will look for a way to link it into one of mine. Barbara

Anonymous said...

I am now experiencing this exact phenomenon. I am doing consulting work for a state funding program for participants with DD, PD & frail elders. Warning calls are given about "establishing boundaries"... between case managers & clients. However, my question about these warnings is this... if we are so concerned about boundaries... how can any of us really do our job effectively? If I was disabled... I would want someone that didn't care as much about boundaries... but instead would accept an invitation to my house for dinner (or vice versa).

Anonymous said...

I am compelled to respond to this posting for two reasons. First, as a former employee of a Social Service Agency, I must share that the regulations in place by regulatory enforcement agencies are not there to make life difficult for anyone but to help protect those that are not able to care for themselves, make the best social decisions, and are not likely to be able to protect themselves from those that may do them harm. Dr. McNair himself noted that the gentlemen in the residential home almost had "no choice but to say yes" to his offer of friendship. So how are they to be protected if not through basic ways such as fingerprinting those that have the opportunity to harm and hopefully weeding out the obvious predators. True, a distinguished University Professor may not be that one but in today's world, who is to say.
Secondly, I am also the sibling of a person with intellectual disabilities that has been victimized by those that would have him believe them to be his friend on multiple occasions. It saddens me greatly though we, his family, have come to realize that sometimes we have a greater responsibility to protect those that cannot protect themselves than to continue to allow them to place themselves in harms way. At the very least, we must direct them towards an environment,or social circle, where they may be a little safer.
Much like Dr. McNair, I too, am far too passionate about this topic. Still, I do agree that every person claiming to be a Christian or a professional in any field that provides service to or contact with vulnerable people need to stand up and make them their own by walking in as much love as would please the Lord.

Anonymous said...

I work with Special Education Students therefore, I am fingerprinted and have a lifescam done by the district. However, I am prohibit to socialized with my students outside the school. The principal specifically told us that if we see them outside campus to have minimul conversation with their parents. Now I think this is sad.

Anonymous said...

On professional responsibility, I admire your commitment to your field. I am planning on becoming a special education teacher. I currently work as a paraprofessional (educational assistant) in a special day class. Before reading this post I never felt moved to get more involved with people with disabilities. It was some time after reading this post that I started noticing that many professional educators leave their passions at work. Many people I have talked with say that they do not get involved outside of the classroom. They do not engage with people with disabilities on the weekend like you and your wife. During my observation at a local group home, I was invited to come back every second weekend to accompany the clients on their outings.

I began thinking about what you said and how so many people like me claim to have a passion for what they do but they do not show it. I accepted the offer and have never once regretted it. Several weeks have gone by and I have thoroughly enjoyed my time with my new friends, but more importantly my interactions have done more for them then I could think. I get calls everyday from my excited friends. I realized the impact that I make in their lives and I feel good that they are having fun and get to leave the facility. Moreover, my being in and around the group home has caused a ripple effect. First, the clients get to leave more frequently, which means they get more social interaction. Secondly, the manager has provided more staff to meet individual needs and rights that have gone ignored.