Tuesday, March 28, 2017

Why Self Determination is important for people with Developmental Disabilities

In California, a recent law was passed called Self Determination which will change the way those who are eligible for regional center can receive services.   Under this law, individuals with developmental disabilities will now have more of a voice in how they want to receive support  as well as promoting integration and inclusion.  Under the current system, services are often given and delivered based on a system of vendorization.  With the vendor system, your regional center has to have a contract with existing agencies and providers in order to get state funding for services.  Unfortunately under this system of vendors and contracts, there is great inequality and disparity in terms of the number and quality of services available depending on where clients and their families live.    This has great implications and consequences because it affects the quality of life in which some individuals will get support which will enable them to live a great quality of life while others probably won't have that same opportunity based on which regional center they are a part of.  For these reasons, the self determination law is crucial because it allows clients to bypass the vendor system and to exercise greater control over important aspects of services and supports.

Now I am going to talk about my own experience as to why I am happy about self determination as both someone who lives with a developmental disability as well as someone who is a client of the regional center.  For starters, I became eligible for regional center services  when I first got diagnosed in preschool.   With the exception of paying for me to attend various summer camps and my early intervention program at UCLA  as a child, my family did not rely on regional center for services such as therapy because the quality of these services were not as great.   Instead, we paid out of pocket for such  services.   Sadly as one enters adult services,   the lack of quality providers and services becomes even more evident in one's life as special education services end.  This is a true depiction of my experience when I entered adult services seven years ago.  I remembered when my mom and I toured various day programs, I was shocked about how these programs were run and that everything was group based and segregated rather than individualized to meet the client's needs.  Often times, there were consumers with various diagnoses and abilities often clustered in a room together doing the same program.  It was very depressing.  Another encounter I had with adult services in which I utilized regional center was with a supported living agency.  A few years ago, I was preparing to move into a dorm and I wanted someone to help me with developing independent living skills.   I met and interviewed with the coordinator/supervisor of one agency that my case worker referred me to and she seemed really nice and was interested in what I wanted to say.   Since she seemed to provide a good impression I decided to go with her agency.  A few weeks later, I got a call from another woman who wanted to meet with me in terms of what type of support I needed help with.  I was under the impression that she was going to help me find support people within the agency that would be a good fit with my personality.  As it turns out, I found out that she would be the person who was going to work with me.  I was a little shocked  that the agency did not even think to check with me of what I was looking for in a support person before assigning this woman to me.  That should be the number one thing that most providers should do before assigning support people to work with consumers since people with disabilities and their families are particular of who works with them.  This is one way that people with disabilities are deny a sense of agency within the system.   There were some good qualities the woman assigned to work with me possessed.  For instance, she was good at helping me in the kitchen in terms of cooking.  However, I could tell that she didn't have the right personality to work with me.  She was passive and I could tell she was not into her job. Not only that, she lacked common sense and good judgment.  One time, she picked me up from school and I noticed that her car had broken seatbelts.  Since she had a trainee with her who happened to sit in the front seat,  I was forced to sit in the back seat which had the defective seat belts.  This was a huge liability issue and it almost put me in danger.  When I brought it up to her, she didn't  get how big of a deal it was that she was driving clients around with broken seat belts in her vehicle.    Did the agency think to inspect her car before she was allowed to drive clients to make sure it was safe?  My experience with this provider is demonstrative of the lack of oversight that often occurs in regional center services.  They often hire inexperienced workers , lack training and offer low pay with a lot of staff turnover.  As I got involved in the autism self advocacy movement and became a active board member for my local autism society, I noticed a lot of families had issues with regional center services from not getting services at all to getting subpar services.  In addition, regional centers are often inflexible of customizing services since they require a agency to be vendored which prevents out of the box thinking when trying to help clients and their families.    

This is why I am for self determination.    As stated before this new law allows me to have more control in how I want to receive the support.  For instance, I can choose who I want to hire to support me rather than having to use individuals that are arbitrarily assigned to me by a agency/provider.  I also liked that the law allows for more room in what types of services to be funded.   Most of all though, self determination presumes competence in people with disabilities and is based on the premise of inclusion.  People with disabilities often feel the need to be in control of their lives.  The power of choice and control, leads to greater life satisfaction.  I can say from personal experience that whenever I had choice and control over something important in my life, I felt more happier and more satisfied versus when things are chosen for me based on another person's wishes.  I know there are opponents against self determination with those concerned that it will enable consumers to make bad choices.  But like anything else, there is a system of "checks and balances (i.e. supported decision making, independent facilitators).    In the long term, having self determination within regional centers will lead to happier outcomes for people of varying abilities.  It restores the true function of regional centers: by effectively serving  consumers and their families.


  1. Bravo Christine -- Thank you for sharing from the heart so plainly and passionately. I would like to share your essay with other online groups that I am in if it is all right with you?

  2. That would be fine with me. The more views the better.

  3. I will then also share with my students - especially exciting for them to hear from an alumn! Dr. Huemer