Autism Costs: Additional Financial Burden for Parents
An article in the NYT, “New Definition of Autism Will Exclude Many, Study Suggests”, highlights the effects of proposed changes to the definition of autism. This will greatly impact the cost of autism for parents with children on the spectrum making it harder for them to qualify for governmental assistance. “At a time when school budgets for special education are stretched, the new diagnosis could herald more pitched battles. Tens of thousands of people receive state-backed services to help offset (autism’s) disabling effects…”. The outcome would most likely prevent higher-functioning individuals from being eligible for any programs or aid.
While I do understand autism is over diagnosed, this will just be another way for the government to try and put a large part of the financial burden back on the parents. Many of them already cannot afford the proper type of care needed for our children on the spectrum. According to one recent study by Harvard, the average life time costs of caring and raising a person with autism is $3 million; a cost the government wants very little to do with. There are at a minimum, a million children and adults that have a diagnosis of autism or a related disorder such as Asperger syndrome or P.D.D.-N.O.S.(pervasive developmental disorder-not otherwise specified). “The proposed change would consolidate all three diagnoses under one category, autism spectrum disorder, eliminating Asperger syndrome and P.D.D-N.O.S. from the manual. Under current criteria, a person can qualify for the diagnosis by exhibiting 6 or more of 12 behaviors; under the proposed definition, the person would have to exhibit 3 deficits in social interaction and communication and at least 2 repetitive behaviors, a much narrower menu.”
For many parents, managing the day-to-day activities and needs of their spectrum child is overwhelming enough. When it comes to the financial burdens presented by autism, the challenges can seem insurmountable. Parents faced with the notion that their child may not qualify for benefits because of impending diagnostic changes can be financially devastated. With that said, it is more important than ever parents of children with autism are realistic about the costs involved. Only about 12 % of parents with children on the spectrum feel their children will be able to feasibly manage their own day-to-day finances. Unfortunately even though parents recognize the need for a long-term plan, many families are overwhelmed by the challenge. Many parents report that an integrated life care plan is hard to find and confusing. For example, less than 20% of parents with children with ASD have created a special needs trust.
Ideally, families should devise a comprehensive individualized life plan that encompasses basic needs and strategies for achieving the best short- and long-term quality of life in every area-food, clothing, shelter, health, finances, family life, entertainment, employment retirement and more. If a new definition of autism is accepted, more and more parents will find themselves faced with added costs. Exploring an Individualized Life Plan (ILP) can be the first step in alleviating the financial strain associated with caring for an individual on the spectrum.
About Charles Massimo
Recognized as industry expert and guest speaker at national industry conferences, Charles Massimo is a published author and media subject expert on topics ranging from wealth/asset management to investment and financial planning for high net worth families, families with autistic children and closely-held businesses.