Adult children with disabilities: Who will care for them when we are gone?

 February 19, 2015
Posted by M&LAdmin4

Thursday, February 19th, 2015

Recently, the staff of M&L was made aware of a terrible tragedy that took place in West Elmhurst, Chicago. On August 30th, 2014, 82-year-old Frank Stack shot and killed his wife (who was also 82 and suffering from cancer) and his two adult children with disability. He then turned the gun onto himself, ending his own life.

Often, in the aftermath of a tragedy, we find ourselves asking questions. How could this have happened? Why did this occur? Can we prevent this from happening in the future? As we learned from reading an article in the Chicago Tribune, Stack was a devoted and loving husband and father. Report after report from special needs service providers, social workers, residential program workers, neighbors and friends described the family as being close-knit, with dedicated parents and a caring home environment. So then, why?

An answer came from the family’s neighbors, who unanimously agreed that the Stacks were “good people.” One neighbor, who had known the man and his family for more than 35 years, reported that Stack had expressed concerns about who would take care of the children after his death. She called it “an act of love.” Another neighbor, a man who lived next door to the family, believes it was a mercy killing. “He [Stack] loved that family very much,” said the next door neighbor. “I think he [Stack] did what he believed was the right thing to do.”

This story, as sad, tragic, and heart wrenching as it is, should be on the lips of every special needs organization, every disability advocate, every person with a family member with special needs, and every disability service provider in the country. The tragedy in Chicago is the worst possible outcome of a situation that every parent of a child with special needs worries about from the moment their child is born: who will take care of him/her when I am gone?

The staff of M&L was asked to comment on this tragedy and the importance of planning for the long-term future of individuals with special needs. We have carefully crafted this reply – please join us.

Long Term Care of Adults with Disabilities: The Next Crisis Facing Americans

Currently, in the US, we are facing down a number of crises related to individuals with special needs. Anyone in the special needs community can speak to the huge gap between the needs of the disability community and the programs that currently exist. And, as if resources weren’t already strained enough, the numbers of individuals with disability in America continues to grow. Consider these statistics:

  • 20% of Americans between the ages of 16 and 64 suffer from some sort of physical, mental or emotional impairment.
  • One in every 26 American families reported raising children with a disability.
  • ASD affects 1 in every 68 children.
  • Nationally, nearly 1,000,000 children with ASD will age into adulthood in the next decade.

These numbers are scary; especially considering that government resources and benefit programs for adults with disabilities are already strained. Individuals with disabilities often spend years on waiting lists, hoping to be placed in residential care homes or assisted living settings – and, as many children with disability are now outliving their parents, the availability of long term care in the future is uncertain. As a parent of a child with special needs, the thought of leaving my child without a place to live or financial support after I am gone is terrifying. This, however, is the very situation that many parents of children with special needs are faced with.

We feel that this is an issue that America, as a nation, must tackle together. Until that time, however, you can take the responsibility for the future of your children with special needs into your own hands by careful financial and life planning – both for now, and the long term.

How you can plan for the long term care of your adult child with disabilities

Here at M&L, we strongly urge that parents of children with special needs begin planning AS SOON AS POSSIBLE. It is never too early to put a plan in place for the future of your family.

To begin, we highly recommend that you complete a financial plan that takes into account the milestones of TWO generations – your and your partner, and that of your child/ren with special needs. At M&L, we offer the Comprehensive Special Needs Financial Life Plan. This plan will help you meet the financial goals that are required for your child with special needs to live comfortably for his or her lifetime.

If you are concerned about the care that your child will receive once you are gone, you may wish to complete a Letter of Intent – M&L offers a letter of intent CD with the Comprehensive Special Needs Financial Life Plan, and can also present a workshop on the topic. For more information, please click here.

We also recommend that parents of children with special needs play close attention to the benefits of Adult Guardianship – it may be comforting for some parents to know that there is someone looking out for the best interests of your child after they are gone. To learn more about Adult Guardianship and the different forms that it may take, contact us. We can recommend excellent special needs attorneys and other professionals to help you with any legal concerns.

As parents of children with special needs, we don’t simply want our child to be comfortably housed, and fed – we also want them to experience family, and community, and a sense of belonging. If this is something you feel your child will miss when you are gone, you may wish to join M&L’s non-profit, Integrated Living Opportunities (ILO)– we are currently creating our own community-based special needs housing, bolstered by networks of support, that are centered around community and relationship building. For more information, please click here. Another option would be to join support/peer groups in your neighborhood, with the intent of building your own networks of support.

Whichever way you want to begin planning for the future of your family with special needs, it is vitally important that you start now – once a plan is in place, you can have the peace of mind that comes with knowing you have secured the a successful and happy future for your child with special needs.

Would you like more information?

Thank you for visiting our blog today; we hope that we have impressed on you the importance of planning for the future of your family member with disability, both in the immediate sense and the long term (i.e. after you are gone). Having a financial plan, as well as the on-going guidance and support of a committed financial adviser can help you to accomplish long-term goals, but can also frequently offer immediate emotional benefits. If at any time you feel overwhelmed, afraid, stressed, or isolated please reach out to us – we have been where you are, and we would love to help.





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