Autism: Parental Planning Challenges

PJ at a neighborhood park in New York

Autism, as a lifelong deficit, is challenging to parents with autistic children as they consider their future. As the Autism Society so succinctly delineates, “In our culture, autism spectrum disorder is often thought of as a childhood condition, with public attention focused primarily on children and the importance of early detection and intervention.  However, autism is a lifelong condition, and the available, necessary supports and treatments change as people on the spectrum move through major life phases. With the rising diagnostic rate at 1 in 68, we must accommodate the pressing need for supports and programs for people on the spectrum across the lifespan…Like everyone else, people with autism move through significant life changes. Their quality of life depends not only on the foundation provided in childhood, but also on ongoing supports that are specific to their educational, medical, social, recreational, family and employment needs…Adolescents and especially adults often have difficulty finding services or even understanding, as many people associate autism only with kids or hold a narrow stereotype of how a person with autism behaves.”

Photo by Girardin Photography

There are many faces of autism and each as different as the autism spectrum itself. Some faces will be able to assimilate into society better than others as the transition into adulthood. But, assuredly, there will be those that will continue to need assistance. Tera Girardin, a photography and author of “Faces of Autism” features 30 different children with autism and tells their stories through compelling photography and messages of inspiration, admiration and celebration after her own son was diagnosed.

My son and his wife are equally concerned about their autistic child’s future. A few years ago, my son had an opportunity to witness autistic adults cared for by an agency taking them on an outing. It had a sobering effect about what probable future would, or could, his son have. As parents, they have done, and are doing, everything they can to prepare for him in their absence and to aid his preparation for life as an adult.

An article posted on the Autism Society’s website point out that in order to ensure a quality of life a child with autism requires an all-encompassing care plan with legal and financial foundation support.  A special needs estate plan will ensure the economic security and ongoing well-being of the child when they’re no longer able. A special needs estate plan as outlined on their website should address:

  • Guardianship – Guardianship is a potential issue at three points throughout your child’s life: while a minor, upon reaching the age of 18 and upon your death. During childhood, who would assume parental obligations if you could no longer do so?
  • Benefit Assessment – The financial security of many individuals with autism depends upon such public benefits as Medicaid and Supplemental Security Income (SSI). Based upon the services that your family member will require throughout life; a special needs attorney can help you determine eligibility for government assistance.
  • Special Needs Trust (SNT) – In order to qualify for certain government benefits, an individual with disabilities must meet stringent standards for financial need.
  • Letter of Intent (LOI) – While not a legal document, the letter of intent is essentially a roadmap providing guidance to guardians, trustees and others on how to care for your child when you are no longer able to fill that role. It includes medical, financial, legal and personal details, as well as your intentions concerning your child’s lifestyle. Click here to learn more about LOIs.
  • Powers of Attorney – If guardianship is inappropriate for your adult child, you may wish to consider less intrusive alternatives that name agents responsible for specific types of decision-making. Click here to learn more about healthcare proxies, financial powers of attorney and educational powers of attorney.
  • Will – A will details your wishes concerning the disposition of your property upon death. It establishes what portion of your estate should be allocated to your child with disabilities and other heirs, and whether certain funds should be held by an SNT.

My hat is off to my children and anyone that bears such a responsibility and arduous burden. Continually wondering if enough is being done by the system(s) or themselves can be a mental strain. There is quite a bit of planning that needs to be done for someone in PJ’s position. Their concern is not just future employment, but healthcare (including their ability to even express health concerns), life insurance, lodging, food, clothing, and everything that factors into having a sustainable, viable life.

PJ at Disney World with siblings

I spoke of a reflection of hope in a previous blog. I don’t know how the Lord will keep him, but I have faith for an excellent quality of life for him in the future. In the meantime, I’m enjoying loving my grandson and his antics with a warm heart and smile on my face as I look at pictures of him with, or without, his siblings.


Feature Image by InstaGSM

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