With very little public areas of any kind open in Illinois, besides our many delightful forest preserves, my son and his summer program mates are spending a lot of time in these parks. Most of then have some kind of natural water, like a small lake or a creek. Without Mom-the-Untangler nearby, the fishing line on my son’s pole became irreparably scrambled on one of these visits, but his hunting inclination remained undaunted. He arrived at the next field trip with a net. As it happened, this worked way better than the fishing pole. Despite again arriving in time for the least productive time of the fishing day—between 10 am and 3 pm—he managed to catch and release 13 good sized fish, at least a few of which his teacher photographed, so I would believe it. On the subsequent field trip, where the available water supply was more of a marsh, this time, he snagged two turtles and two frogs (also later released). A net, as it turns out, not only allows one to catch more fish, but it also allows the catching of a variety of other creatures that would never be picked up with a pole.
How does catching fish with a net connect to special needs planning, you may ask? I see it as an analogy for resource procurement, where the goal is to capture as broad a range of resources as possible. Two weeks ago in a previous blog, I talked about the visioning stage of the planning, in which the person with a disability imagines the type of life that s/he would like at each stage and what elements that life itself might include. Last week in another blog, I discussed the labor-intensive steps of identifying all the people and systems that would be required to actualize your family member’s vision AND the costs associated with finding, nurturing, and maintaining each of those components. This is where the discussion of resources become crucial. Speaking as the former executive director of a supportive living community for adults with intellectual and developmental disabilities, I can tell you that such support is expensive. Depending on the level of support required, the annual cost could be anywhere from $25,000 to in excess of $100,000 per year. If your adult child with a disability is 30 years younger than you, when you retire at 66, your adult child might at that point still require another 50-60 years of supportive living. To cover fifty years of $50,000/year, taking into account 2% inflation, you would need to have over $1.5 million set aside for your child in excess of whatever funds you, yourself, will need to cover your own retirement. If the funds are well invested, you could start with a somewhat smaller pool of money, but you then may have market risk to consider. The point is that it will take a lot of resources to make your family member’s vision a reality. (photo courtesy of Raghavendra Saralya via Unsplash).
This is why I advise every client to help her/his family member with a disability apply for every government benefit to which s/he may be entitled. To me, this approach provides you a net, which will allow your son or daughter to capture as many different kinds of services and funding as s/he may need. Sometimes, I get pushback, however. “My son/daughter is capable of working so s/he won’t be on SSI and Medicaid long enough to be worth it.” Or “The application process is too confusing, and we’ll probably be denied and have to appeal.” Or “The rules are too complicated and there is too much paperwork.” Or “If we use Medicaid waiver funding, we’ll be subject to the whims of a service-providing agency and our son/daughter’s choices will be limited.” While these are all legitimate concerns, not one of them is 100% true.
If your son or daughter with a disability is capable of working, I absolutely encourage you to spend as much time and energy as is needed to help him/her get and stay employed and not only as a sound financial strategy. As I have written before and likely will again, work provides a whole host of benefits such as meaning, connections, community, and opportunities to learn as well as a welcome paycheck. Within the system of government benefits, working even facilitates movement from benefits that are essentially welfare to benefits that are earned. It is true that the rules around becoming eligible and maintaining eligibility for government benefits (such as Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid (including Medicaid waivers) and Medicare) can be confusing and are even more complicated for individuals with disabilities who work. There is a lot of paperwork required, and you may be denied—the more capable your son or daughter is, the more likely you will be denied at least once. But an experienced professional, who understands the internal logic of Social Security, Medicaid and your state’s disability services system, can help you to create an application strategy and package. If your son or daughter truly needs services, these services can be demonstrated to be eligible for something.
Yes, using government-sponsored benefits sometimes—but not always—requires you to work with a disability-service provider; and yes, some agencies will not have choices that are acceptable to your family member and you. But some providers may if you look hard enough. The supportive living community that I ran in the Chicago area is part of a large, international network of such communities called L’Arche. L’Arche Chicago is funded by the same mechanism—Illinois’ Community Integrated Living Arrangement (CILA) Medicaid Waiver that funds typical agency group homes. Yet L’Arche, in which the people with disabilities are active, contributing members of the community, who advocate, work, have relationships, travel, and participate in the running of the organization, is anything but typical. The Chicago area also boasts The Arts of Life, a fine and performing art community by and for people with intellectual and developmental disabilities. The organization has a creative, innovative approach, even though it is funded by Medicaid waiver dollars.
Some families decide that on their own, or together with other families, they will create supportive living situations for their son or daughter with a disability. If government funding is involved, this may require becoming or partnering with a licensed agency. Yes, this can be a lot of work, but as a financial planner, I cringe a bit when I hear a group announce they will forego using public funds in order so as to have no limiting factors on their plans. While all participants may be firmly committed to shouldering their part of the financial burden at the project’s inception, the financial fortunes of one or more families may change in the future. One or more parents with the group may lose a job or pass away prematurely or develop extended or unexpected long-term care needs of their own. Or one family may decide to leave the first project for another, leaving a financial gap. Sometimes, the lack of government funding itself becomes the limiting factor because the project cannot maintain private contributions at the level it needs to be self-sustaining.
With his multi-application net, my son was able to catch not only fish, but crawfish, a baby snapping turtle, and several kinds of frogs.(All of them were returned safely to their natural habitats after some examination). With eligibility for all possible government benefits, your family member will be able to combine those public resources with her/his own work income along with gifts and legacies from the family to have the best chance of sustaining the life