By Tonya L. Williams
Our severely autistic loved ones are growing in number and here to stay, and we must prepare the caregivers to be qualified, caring and knowledgeable. No more excuses. No more ignoring our loved ones.
We all should be writing our legislators, the White House, and state lawmakers. We need new laws to prepare our system, and workforce, to deal with severe autism.
Two key problems are the lack of training and lack of supervision.
Did you know some states allow people to operate homes that have never had a fingerprint from FBI or state background check, or verify the applications to see if the information is true or not? One state’s Department of Developmental Disabilities has been allowing group homes to open up based on applications stating that they have qualified staff who know how to work with autistic individuals, without any actual fact checking. Basically, they allow almost anyone off the street to take care of our nonverbal, limited speech loved ones.
And where is the training? The certificate programs? The licensing? There needs to be training for severe autism that should be months long before one could earn a certificate, and it should be updated every two years. They need to learn how to handle aggressive meltdowns, property destruction, self injury and injury to others. All states should have the same curriculum, that way everyone would be educated and prepared for the individuals with severe autism. All accredited community, state, and university colleges should have this as a continuing educational class or an allied health class. Also, the EMS, Red Cross, FEMA, and all hospitals including the security guards should offer this same training.
Taking care of our adults with severe autism is a serious job — we went through a couple of homes that couldn’t handle my son. And it requires serious supervision. Some states offer almost no supervision of group homes and other programs serving the severely disabled. During Covid19 the Coordination of Community Services (CCS) sometimes stopped visiting their clients altogether. Instead they would talk to the directors of the group home and go by the word of what these people tell them about their clients’ well being. The client could be dead for all the CCS knows. I sometimes think my son would have been dead if I didn’t check on him through FaceTime or visited him. There should be a mandatory law that all DDA must insure that all group homes and CCS shall have a way to Facetime, Skype, Zoom, etc. their clients.
We must not let our type of autism get brushed aside like a taboo that no one wants to talk about. There must be laws to ensure not only that individuals with severe autism get the help needed from trained, prepared, qualified staff but also access to housing! We need to be creative. For example, how about housing built near colleges so students could get experience working with this type of autism? Students majoring in nursing, special education, clinicians, social work, etc. can get hands-on training to become heroes for our loved ones.
Yes money also plays a factor in the quality of care. I think that when all states make a across-the-board curriculum on the fundamentals of severe autism care, it would make a huge difference. Think about the possibilities — having qualified supervisors, program managers and personnel will make the greatest difference in our children’s lives.
Tonya L. Williams is the mother of a son with severe autism. She lives in Maryland.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.