The following letter was sent in response to the call for comments on the proposed HCBS Access Act. We encourage all autism families to submit their comments as well, to HCBSComments@aging.senate.gov, before the April 26 deadline. Details here.
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To: The Honorable Senators Hassan, Brown, and Casey, and Rep. Dingell
Re: Gabler Family Comments on the Discussion Draft of the HCBS Access Act (HAA)
We support comments of the National Council on Severe Autism (NCSA)
Date: April 19, 2021
Dear Senators Hassan, Brown, and Casey, and Rep. Dingell:
Thank you for the opportunity to comment on the Discussion Draft of the Home and Community Based Access Act. We very much appreciate your efforts to improve the fragmented, difficult-to-navigate system of adult care of people with developmental disabilities.
We are stakeholders. We have a 24-year old nonverbal son with severe autism. Douglas will require 24-hour care and skilled supervision for the rest of his life.
We support in full the comments of the National Council on Severe Autism (NCSA). We respectfully request that you accept the recommendations of the NCSA to retain and expand services, facilities, and options for people with severe autism, and we enclose a copy of the NCSA comments with this letter.
We also want to tell you about our son and the severity of his challenges so you will understand why we support the NCSA comments.
Douglas is profoundly nonverbal. He cannot communicate anything about his needs, his wishes, or even his state of health. He is very difficult to care for because we never know if he is having a problem. Does he feel sick, tired, hungry, threatened? Has someone treated him badly? What happened today? We never know. You cannot imagine how difficult it is to care for someone when you have no idea of what he is feeling.
Douglas is prone to Self-Injury. This is a devastating behavior that is common among people with severe autism. When he is upset, he will bite his hands, hit himself on the side of his head, or punch himself in the nose. He has given himself black eyes. His hands have been so bitten up that he looks as though he were attacked by a coyote.
Self-violence unfortunately can lead to aggression against others. If he becomes that agitated, he may turn around and start hitting others. We have been hit, bitten, and pinched. Can you imagine how upset a person must be if he feels he has to engage in these behaviors to get his needs met?
Many people are surprised to hear that these behaviors are common among people with severe autism. That is why this group of people needs specialized supervision and a variety of options for their long-term care, as the NCSA comments explain.
I cannot convey to you how much we fear for our son’s future after our deaths. Douglas is currently doing well because we (his mom and dad) provide “extraordinary care” around the clock, seven days a week. We also provide “informed care” because we have educated ourselves in the scientific principles of Applied Behavior Analysis (ABA), and we know how to maintain his good behaviors and increase his skills with positive reinforcement.
Many people are surprised to hear that the use of scientific principles of positive reinforcement to increase learning and maintain good behavior is resolutely ignored by the American disabled adult care establishment. This determination to ignore the scientific principles of ABA terrifies us, because Douglas’s behavior would deteriorate within a week to unnecessary lows if he were in a “care” setting that had no tools other than commands, threats, and coercion. He would become violent in response to such a bad environment and would then be subject to abuse and chemical and physical restraints.
Douglas needs the following services in place to have even a chance at a safe and reasonably satisfying life after we die:
• He must be in a setting that is designed, staffed, and managed by people who are trained in the principles of Applied Behavior Analysis (ABA), and who know how to use all the tools and procedures of that science to maintain his good behaviors and help him learn new skills. Currently it is extraordinarily difficult to access ABA for adults with severe needs.
• He must be in a residential setting that has the professional skills to serve Americans with severe cognitive, functional and behavioral disabilities, and he needs access to Intermediate Care Facilities. The preferred “community” placement du jour – some isolated apartment with round-the-clock staffing from a constantly changing cadre of $15/hour aides -- would be a disaster for him; he would be beaten up or dead within a week.
Despite the severity of his autism, Douglas is a charming and cheerful young man who loves to go out and have a good time. If you have never met a person with severe autism and would like to meet Douglas, we are nearby, just across the district line. He is currently enjoying an excellent quality of life because of the care we provide, the training we give his aide, and the efforts we make to get him involved in activities that he enjoys. We desperately hope his quality of life will continue after we die.
Once again, please come and visit. We can even bring him to you. He loves to ride the Metro.
Thank you for your time and attention. Thank you for learning about Douglas and the reasons we support the NCSA comments, and please, please call if you have any questions.
Sincerely,
Martha Gabler
Mother and Legal Guardian of Douglas Gabler
Enclosure: Comments of the National Council on Severe Autism (NCSA), also online at https://www.ncsautism.org/blog//ncsa-comments-on-the-hcbs-access-act-proposal