Autism, Self-Determination In Our Community

Natt Alschuler Autism Society LA

I had the opportunity to attend a two day conference sponsoredby the Autism Society of Los Angeles (ASLA). The conference was to discuss the advance in allowing Self-Determination for those with Developmental Disabilities. The biggest two changes pending for those with Developmental Disabilities are: First the move to Home and Community Based Services (HBCB) as whereto provide services and housing to persons with Developmental Disabilities, over the previously preferred model of Institutions and Institutionalization.  The Second big change is the introduction ofthe option of what has been termed Self-Determination which effects how and what services are to be provided to those with Developmental Disabilities.

The first of these (HBCB) is seemingly straight forward and will only become complicated in its implementation. Rather than housing people in institutions and providing services at institutions, thepreferred place to do this is now in homes and local communities, referred to as Home and Community Based Services (HCBS).  The impetus for this comes at this time from the changes made by the Center for Medicare Services (CMS) who have changed the rules for providing federal funds , requiring the states to start transitioning now, and to be in compliance by March 17, 2019. The HCBS Advocacy Collation, summarizes the new rules which took effect as of March 2014 as follows:

  • Be integrated in and facilitate full access to the greater community;
  • Optimize autonomy and independence in making life choices;
  • Be chosen by the individual from among residential and day options,  including non-disability specific settings;
  • Ensure the right to privacy, dignity, respect and freedom from coercion and restraint;
  • Provide an opportunity to seek competitive employment;
  • Provide individuals an option to choose a private unit in a residential setting; and
  • Facilitate choice of services and who provides them. 

Reference is made to 79 Fed Reg/2984,3030-31 to be codified at 42 C.F.R Section 441.301(c )4).

The second major change is the implementation of a system referred to as Self-Determination.  This system adds as an option to the current method of providing services a second option. The current system is essentially that a person with Developmental Disabilities, who is referred to as a "Client", is assigned services and service providers though the Regional Center. They have relatively little choice or input as to who, where or when services are provided. They can  either take what is offered or you forgo it. In some rare cases they can expend substantial amounts of money, time and attorney effort and maybe they will get a change. Now the second option that will be offered is referred to as "Self-Determination". Simply put, the "Client" is given a budget, it is then the Client's, responsibility to hire, fire and pay the person, persons or companies that they deem appropriate.

The person with Developmental Disabilities is not expected to design and implement their program without help. The help will either be donated by friends, family or other entities, or paid for by the disabled person from their budget. It is important to note that the budget is not increased to account for the additional expenses. However, the reason that this is becoming the new model is really very simple. Statistically after running experimental programs, it is cheaper than the current model. It costs less to actually give the Developmentally Disabled Person(and their support team) the money and let them design their own program than to micro manage it though the government.

Briefly the way the model works is that the Developmentally Disabled person, along with their family, friends and support staff, as determined by the Disabled Person, with or without the use of a professional facilitator, will determine the Developmentally Disabled persons needs in order to have a full and complete life preferably in the community (Home and Community Based Services (HCBS)).  Then with or without the use of professionals, the plan will be implemented.

At the conference Dohn Hoyle (Former Executive Director, of Public Policy The Arc Michigan) presented what I found to be an extremely profound statement made by the Pennsylvania Supreme Court. The court was addressing whether a Developmentally Disabled person should have their rights taken away in order to appointment a guardian (what I we refer to in California as a Conservator), and the statement I believe is equally as important in understanding how we can entrust the Developmentally Disabled with the rights and responsibility to design their own program and arrange their own services, when by definition they are in fact Developmentally Disabled. The quote is as follows:

"Persons cannot be deemed incapacitated if their impairments are counterbalanced by friends, family or other support"

While change is often hard, change in the government and institutions extremely hard, and change which involves a move of money from one group to another is almost impossible, it is important to appreciate the advances that are being made. We are now at the door step of a new paradigm for making the Developmentally Disabled part of our community and in doing so make our community that much more diverse and better.

Natt Alschuler1 Comment