Adult Benefits & Legal Issues

Fully 74% of parents of children with ASD fear that their children will not have enough financial support after they die, while only 18% of parents of neuro-typical children share this fear, according to a 2008 study by Easter Seals. However, this same study suggests that many families are not taking practical steps to address this concern:

  • 50% sought a professional for financial advice
  • 38% designated a guardian or created a will
  • 17% established a special needs trust
  • 24% identified living arrangements if the parents are no longer living

Because the ASD is so varied in its impact upon those who experience it, these findings should be interpreted with some care. For example, many adults on the spectrum do not need -- nor would a judge agree to -- full guardianship. However, it does suggest that families would benefit from greater assistance in thoughtfully reviewing the benefits and protections that their son or daughter may need.

Adulthood, Benefits and Legal Issues
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There should be no secret as to why some parents are not able to craft an effective financial plan. While many individuals with ASD qualify for various state and federal disability benefits, each category of benefit is subject to specific eligibility requirements and an independent application process. This can be tremendously confusing, and once again the variability of ASD compounds the challenges. Fortunately, as more young people with ASD enter the adult system, there are an increasing number of online resources. Two that merit special mention are: The Institute on Disability's Work Incentive Resource Center, which pulls together information and links for a wide range of benefits; and Autism After 16, a new website that offers in-depth analysis of many topics specific to post-secondary transition. Parents and other caregivers may also require the assistance of a benefits specialist, lawyer, case manager or parent-to-parent volunteer in navigating this process. Links to these providers or their professional associations are provided here.

As parents delve deeper into the complex systems that provide long term supports, they may also confront the challenging question of guardianship and substituted decision making. The NH Disability Rights Center has done a great deal of work in this area, and offers some very helpful resources. This may also be a good time to discuss a difficult question that is never far from the mind of a parent of a child with a disability:   Who will support my son or daughter after I am gone, and how?   Again, this may be a time when the advice of a benefits counselor or lawyer is a worthwhile investment, especially if you are considering creating a special needs trust or have other concerns about estate planning.

Because every family situation is unique, there are no hard-and-fast rules for benefit planning, but experienced parents offer this advice:

  • Long term planning is not a goal, it’s a process. The needs of your son or daughter may change, as will the terms and conditions of government-funded benefits. Give yourself permission to revise your plans as needed.
  • Benefits are a means, not an end. When designed well, government assistance is a way to exercise choice over one’s life in a manner similar to that of non-disabled persons.  Benefits, in other words, should enable, not constrain, one’s life. To keep the role of government assistance in perspective, many individuals and families begin the planning process by looking at their priorities, personal goals, and vision for the future.  Person-centered planning is a tool that can help structure this important conversation. 
  • The benchmark for eligibility is the experience of individuals who do not have a disability. We are fortunate in NH in that developmental services are not restricted solely to those with intellectual disability. However, those who experience autism in ways consistent with a label of Asperger Syndrome or so called “high functioning autism” fall into the “grey zone,” where they may need support but fail to qualify for funding through the area agency system.  Application and, if necessary, appeal should be framed in a way that explains how the individual with ASD faces challenges when engaging in the same activities as non-disabled age-peers.  
  • Stay alert and make your views known to your elected officials. The parents of individuals with developmental disabilities are organized and well respected by policy makers in Concord.  Adult services in NH would be far less sensitive to the lived experience of those with disabilities and their families if it were not for the tireless efforts of family advocates.

For a pdf of this introductory information, link here
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