Caring for Adults with Disabilities After Parents are Gone
Saturday, December 12th, 2015
On Thursday, February 19th of this year the staff of M&L published a blog titled, “Adult Children with Disabilities: Who will care for them after we are gone?” The blog, inspired by an article in the Chicago Tribune, took a look at the tragic story of the Stack Family in West Elmhurst, Chicago. According to this article, in September of 2014 Frank Stack – a loving and devoted 82 year old father of two adult children with disabilities – shot and killed his two adult children with disabilities, before killing his terminally ill wife, and then himself.
At the time of the blog, we wrote: “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?” (Note: to read this blog in full, please click here.)
Well, our wish for this story to become well known and circulated has come true: last week, (no doubt because of the potency with which it resonates with all parents of children with disabilities) the New York Times Magazine covered the story again in their article titled “Four Bodies in Elmhurst.” And, M&L owner/founder Maedi Tanham Carney CFP®, CWIC had the privilege of being asked to contribute.
Today, we will take this opportunity to shine more light on the tragedy that took place in Chicago, as well as the issue of long term care of adults with disabilities in general. Please join us.
Four Bodies in Elmhurst
As mentioned, at the heart of this tragic story is a loving family from West Elmhurst, Chicago – the Stacks. The Stack family consisted of father Frank Stack, his wife Joan and four children; two of their children, daughters Gloria and Barbara, are non-disabled. The other two children Francis (Frankie) and Mary had disabilities which required high levels of support. As is reported, after a call to a supervisor at Frankie’s group home, police were alerted and arrived to discover the bodies of Mary, Frankie, Joan, and Frank in the Stack family home.
The Stack family was well known as a loving family, consisting of caring and supportive parents that were becoming worn down with pain and illness. The poor health of Frank and Joan, combined with old age and the responsibility of caring for adult children with disability, no doubt amounted to a heavy burden to carry. The conclusions about the event– drawn from commentary for other individuals in the Stacks’ life, including friends, neighbors, and caregivers for Mary and Frank, among others all amount to one assumption: the fear of what may happen to Mary and Frankie after the death of the parents prompted Frank to take drastic action. As hard as it may be to believe, Frank’s actions were – it was implied – prompted by love. In fact, the coroner – in response to the scene – was recorded as saying, “This could be my suburban family home – this was a home where people who care about their family lived. I’ve been through the house and talked to the various members of the family and this isn’t a situation where there was anything other than love that I saw all around this place.”
The Stack’s story echoes the not-uncommon desire of many parents of children with special needs; the desire that their children with disabilities “go before they do”. This desire is prompted by the fear surrounding the uncertain futures their children may face without the support and care of their parents. As author Jim Himmleman writes, “it’s easy to assume that the parents faced, or believed they faced, an imminent crisis around continuing care for Frankie and Mary. There are waiting lists in many states of up to 10 years for the kinds of group homes that they (Mary and Frankie) were living in. If parents of caregivers of children with these disabilities die without having arranged for the care of their child, the child’s future is left to the state – which may mean an emergency placement at a group home, or some other kind of bare-bones facility that might not meet the person’s needs.”
Here at M&l, we are very aware of this fear that parents carry with them – in fact, we share it. In fact, Himmleman quotes Carney – as both a parent and a special needs financial and life planning expert – in the article:
Maedi Tanham Carney, a Washington-based financial planner for parents of children with special needs, acknowledges how universally difficult it is for parents of children with disabilities to face the reality of their own mortality. The worry, as she puts it, is ‘‘Who will be as good as me at taking care of my baby?’’ Tanham Carney herself has a daughter with intellectual disabilities who underwent two kidney transplants as a teenager but is now in much better health. She confesses that, during her darker times, she entertained the fantasy of going out with her daughter ‘‘like Thelma and Louise.’’
Planning for “When You are Gone”
Actively planning for the future that no longer includes you or your spouse is not an easy task. In addition to being emotionally and mentally taxing, the process can also be complicated and is certainly complex; this, combined with the often overwhelming fear of the unknown, is perhaps the main reason why parents often avoid planning for the future, despite crippling fears of leaving their children unprotected in the event of the death of the parent of guardian. As Himmleman points out, however, planning for the future of your adult child with disabilities is something that can be accomplished given the right help and guidance:
“The financial mechanics of planning for the future of a son or daughter with disabilities are daunting and complex, but they can be managed with effort and help. There are special-needs trusts, Medicaid waiver services, and second-to-die insurance policies that can be set up. The important thing is to plan…”
Here at M&L, we agree wholeheartedly with this assessment. The most important thing is to plan – and we have a number of services that can get you and your family members with disability started on the right track to financial security and stability now, in the future, and after you are gone. These services include our Comprehensive Special Needs Financial Life Plan, Insurance Needs Analysis Planning, and Government Benefit Counselling, among others. Please visit our Services page for more information.
If you would like to discuss any of these services, or take the first steps towards creating your own financial plan, or just to talk about your concerns about the future and where you can look to for assistance please, please contact us! The bottom line is that we are all in this together – if we support and help each other, no one needs to feel helpless, and no one needs to feel alone.
Integrated Living Opportunities
Regular readers of this blog are no doubt aware that M&L owner/founder Maedi Tanham Careny (CFP®, CWIC has an adult daughter with disabilities. When Carney began planning for the future of her daughter, she was very concerned about how Ellie’s future would look both as a young adult, and also after Carney herself was gone.
Motivated by the need to ensure her daughters long-term wellbeing, and inspired by community building organizations in other parts of the country (namely Center for Independent Futures, operating out of Evanston, Illinois) Carney banded together with five other families in similar situations to create Integrated Living Opportunities, a 501c3 non-profit organization that helps its members create personal and professional networks of support that help individuals with disabilities live supported yet independent lives now, in the future, and after the primary caregivers are gone.
To be specific, ILO is a coalition of parents of young adults with special needs who are working together as they face the challenging experience of preparing their children to live independently in a caring community, and to support and celebrate them once they have taken this life changing step.
Perhaps the best way to describe ILO is to take a quote directly from a person that the organization was created to help – as stated by Debbie Fickenscher, an ILO participating family member (and also a member of ILO’s Board of Directors): “Now that I am a participating family member in integrated Living Opportunities, I know that the intentional community created for my daughter is the key to securing her future. Now the answer to, “what happens to my daughter when I am no longer to be her advocate? Is ILO.” If you are interested in learning more about ILO, including how to become a participating family and ensure that the future well-being of your children with disabilities will be taken care of, please contact us!
Would you like more information?
From all of us here at M&L, thank you very much for dropping by today. If you would like more information on anything that we discussed in this blog, including financial planning services for families with special needs, please let us know! We would love to meet you and listening to your hopes and dreams for your own family with special needs. In addition, you may wish to use our website as a resource for financial and life planning tasks – we have posted a plethora of information related to all special needs planning issues in our blog, our resources section, and under general information.
Thanks again for dropping by – please visit us next week!
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