Hey all, I'm new to the site. I had met "Niles" a couple of months ago and during our conversation I learned that we were both advocates of individuals but in different realms. He suggsted I come here. So here is my post of why I am who and where I am.
I am Director of Operations/co-owner of an agency providing services for individuals with developmental disabilities.
Let me give you a little background on myself. My passion is Supported Living. What a supported living coach does, is assist Individuals with developmental disabilities in living as independently as possible. I assist with managing their healthcare, their financies, etc. There are numerous other services for these individuals as well. My agency provides in home supports (which assists the individuals with daily living skills such as cooking, cleaning, etc), supported employment (which assists individuals with finding gainful employment in the community and holding down a job), behavioral services (which work with the individuals are targeted behaviors that are threating to their health, safety, and overall well being) and last but not least specialized mental health (which is basically counseling).
Please keep in mind, I am not attempting to recruit any new clients by posting this blog. I know there are other wonderful providers and agencies out there, but we are a dying few.
When I moved to Florida I worked for an agency that claimed to be a advocate for individual rights. While working at that agency, I noticed NUMEROUS violation of individual's rights. And since leaving that agency, I have learned of many more.
Some companies rent apartments in the community for their clients to live in. If there was an apartment who already had someone living there, the company would not want to have to pay the other part of the rent, so they would give another client the option of moving in the vacant room. Some of these individuals are not able to advocate for themselves. Therefore, many are easily manipulated into moving into the apartment, program,etc against their will. If the individual will not move to where is convienent for the agency, they discharge the individual. THIS IS A VIOLATION OF RIGHTS.
My second observation is agencies are billing for providing 8 hours of service to these individuals daily. Yet, they have one person working the day shift, 2 working the evening shift, and one spending the night (not an awake staff), to deal with 8 clients. Now, tell me, how can 3 staff provide 8 hours of service to each of those 8 individuals every day? This is taking advantage not only of the client, but the system in general. Our tax dollars are what funds the medwaiver program. We are paying for these individuals to receive less than quality, and unacceptable care.
My third observation was that when a client was a "problem" due to aggressive behavior, etc. they are medicated to the point they are zombies.
I have, at this point 7 years experience in this field on a professional level. And these are just a few of the MANY observations I have made.
My entire life, I have had a dream of owning my own business, while serving the community. After seeing the things that are being done to these individuals, I decided to open an agency that would actually provide not only the care we are paid to provide but that would go above and beyond. My hope was to be able to reach so many of these individuals and pull them out of the horrible situations they are in and give them a chance at a happy life.
Let me explain how we reach our clients. Each person on the medwaiver (which is a state funded program for individuals with developmental disabilities) has a support coordinator. Their support coordinator is to be their number one advocate. They assist the individuals in choosing agencies to provide services to them.
I recently had a situation with one of the individuals I have the pleasure of serving. We will, for the sake of confidentiality say his name is Pete. Pete is a great guy, in decent health, loves being in the community making friends, etc. However, Pete has a problem with propositioning people for sex. Obviously this is a huge health and safety concern. Our main job while working with him is to teach him how to talk with people appropriately, be safe while in the community, etc. Tonite I received a phone call from his support coordinator (who keep in mind is suppose to be an advocate for their client) telling me that my staff is no longer to take him into the community except for 3 cases. I cannot mention specifics as to protect this individual's identity. However, none of those 3 cases is to make friends. I reminded the coordinator that we are here to assist our individuals with being integrated into the community. I was told that under no circumstances were we to take him out to eat, community functions, etc because he is calling his coordinator too much with too many new ideas, and he is getting these ideas in his head, due to my staff taking him out. How are we to assist him with learning to be safe in the community if we're not allowed to take him out?THIS IS A VIOLATION OF RIGHTS.
This post is primarly a venting tool for me. It just breaks my heart to see what these individuals are put through. And the things I have mentioned thus far are some of the easier issues to take. There are staff flushing medications because the person is acting out and the staff decides the medication isn't helping. There is physical abuse, verbal abuse, sexual abuse, neglect, exploitation, etc.
I will end this with 2 situations I've recently dealt with.
The first being, I have 2 individuals who are a couple and choose to live in the same apartment. Their primary disability is mental retardation. Last week, a door to door salesman came trying to sell them a Kirby vacume cleaner. They exploitated and manipulated these individuals. They signed a contract agreeing to pay 2300 for a vacume cleaner. While these individuals are legally competent, by talking with them you can tell they have some problems. What kind of sick person does it take to take advantage of someone who is obviously disabled?
I started working with an individual in April named Larry (not his real name). I had received a call from Larry's support coordinator telling me he was living in a horrible environment and needed to move ASAP. We immediately agreed to take the client. When we arrived to help the individual pack to move, he informed us that no one had been to see him in 3 days. It was 85 degrees outside, the AC was not running in the house and there was a lockbox over the control so he could not change it. THIS IS ABUSE. There was hardly any food in the refridgerator, the house was roach infested, Larry stunk due to not having AC on, etc. The conditions were deplorable at the least. Yet, this provider was being paid for providing 24 hour support. Larry had not cleaned his house EVER, had not showered in 2 weeks (and didn't know he needed to shower more often), he was out of his medications, etc.
These are just some of the issues I see on a day to day basis. I am young, and I have devoted my LIFE to these individuals and imrproving their quality of life. So many of these individuals are unable to speak up for themselves, too scared to speak up, or unaware of who to speak to. We need to do something to fix this problem. I am only one voice, but I am a voice that will not go away. I will never stop advocating not only for the individuals I serve, but for all people with developmental disabilities. I am not trying to make myself sound like anything special, because I am not. Many people in this field say they are here to help these individuals. What I have learned with my brief time of experience is that these individuals teach me more, and give me more than I can ever hope to give them. It is the individuals with developmental disabilities that make my quality of life better, and I will spend the rest of my life attempting to return the favor.
