By: Esther B. Hess, Ph.D.
Dear Developmental Doc,
I am the father of a 6 year old boy who is severely handicapped by autism. My wife and I are doing everything we can think of, in regards to getting him the best interventions that are currently available to us. But, I keep getting this nagging feeling that it’s not enough. The other night, I woke up in the middle of the night haunted by the question, who will take care of our son when we are no longer around to do the job? We also have a neuro-typically developing 3 year old, but I wonder whether it’s really fair to saddle our daughter with the long term responsibility of taking care of her brother? Do you have any suggestions?
Lawrence S., Santa Clarita, CA.
Dear Lawrence,
Parents of children with special needs often confront difficult life choices regarding the long term care of their children much earlier than parents who have children who are neuro-typical in their development. I appreciate your thoughtfulness regarding the poignant question of whom and how your child with needs will be taken care of once you and your wife are no longer able to shoulder that responsibility. Equally important is the question of how much responsibility you want your daughter to have in the long term care of her brother. While it might seem absurd to have to consider these questions when your children are 3 and 6 years old, you are making the first steps into a thoughtful plan of action for your son that extends well beyond your current intervention strategies. The first suggestion that I give to my parents in my practice, is to get an education. That means finding an attorney/advocate/special needs insurance agent who understands the intricacies of wills and living trusts as they apply to special needs minors and who is willing to give you a complimentary first session that allows you to explain your specific circumstances and to see if the support being offered fits the needs of your family. These specialists can be found either by contacting your local branch of the American Bar Association and asking for a list of litigators who specialize in this area and/or contacting your local autism support group (such as Autism Speaks, Autism Society of America or TACA-Talk About Curing Autism), for help in finding legal references and guidance. Along these same lines of thinking, while planning for your child’s financial and residential future, you will want to consider having a discussion with your child’s school and in particular the resource specialist for special needs who can guide you through the IEP (Individual Educational Plan) process as it applies to services that school can provide both now and as your child grows. By the time a child is 16 years old, ideally parents want to have in place a plan for guiding their child’s next steps whether in an academic and/or vocational placement and to have an understanding as to what services are provided by state agencies. By taking the time now to be thoughtful in your planning of your child’s future, you will be starting off the New Year with the power that comes from knowledge, insight and direction.
Yours,
Esther B. Hess, Ph.D. a.k.a.. The Developmental Doc.
Esther B. Hess, Ph.D. is a developmental psychologist and executive director of a multidisciplinary treatment facility in West Los Angeles, Center for the Developing Mind. For more information and/or to contact Dr. Hess please visit the Center for the Developing Mind’s web site at www.centerforthedevelopingmind.com.
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