If you have a child or children with a disability who require special care and cannot function without assistance, taking precautionary steps early on to ensure their welfare when you are gone is critical.
Notice that this sentence avoids using the term special needs.
The National Center on Disability and Journalism says the euphemism special needs is now widely considered offensive because it stigmatizes that which is different. Disability is the preferred term these days for these very special people.
Protecting the Children
Basically, clients who come to Hefren-Tillotson to work with me want protection. Typically, parents and grandparents provide emotional and financial support in many situations. This one gentleman client also wanted to protect the money his son, Peter, had in his name.
Dad did a really great job of doing everything on his own, but it soon became complicated for him. So he wanted to “clean it up” before anything happened to him. We provided him professional help in this area and also looped in an attorney to draw up what is still called a Special Needs Trust, as well as ideas on how to invest Peter’s money.
This type of irrevocable trust allows the beneficiary to receive income without jeopardizing their eligibility for income-restricted programs like Social Security, Supplemental Security Income, Medicare or Medicaid.
Change Perceptions and Begin Planning
The inherent instinct to begin some type of planning to make sure everything is properly being taken care of is when you first learn of the disability. Unfortunately, some people do it when they get around to it because they believe they “have time,” and until there is a problem, it doesn’t get the attention it deserves. My advice is definitely do not wait.
It is such a personal matter that, sometimes, clients do not share with me what type of disability their child has. Parents cope with their personal struggles in different ways and I understand that. A child with a disability also suffers from losing skills and not learning anything. The child of one client in particular is able to get on a bus and go to work. He loves to interact and functions at his daily job with the daily routines that come with it.
Parents of kids with a disability are very nurturing, as well as cautious with the decisions they make especially with beneficiary designations, and provide a higher level of care and concern over the well being of the child. Instinctively, they do everything for their child, most times without ever engaging them in the process when perhaps they could.
When I was asked about the possibility of stimulus checks hurting or jeopardizing income or care already being received, I was surprised. Parents said they didn’t want the money because they don’t want problems that might arise from receiving it. Honestly, I do not believe receiving stimulus money would create any type of problem, but if it is on peoples’ minds it is a problem that needs addressing. And that’s perception.
Not Just Kids, Adults Too
Both children and adults share everything you see here. Disabilities are defined in four categories:
- Physical – muscular dystrophy, MS, chronic asthma, epilepsy
- Emotional/ behavioral – ADD, bipolar disorder
- Developmental – down syndrome, autism, dyslexia
- Sensory impaired – blind, visually impaired, deaf, limited hearing that causes an individual to require additional or specialized services or accommodations such as in education or recreation.
For adults with disabilities, it’s crucial for them to have a new ally in their corner who is taking care of them. Deceased parents are primarily in their 50s and 60s for these folks. Many, not most, have directed someone to step in and provide the same level of care and concern for the children, who are in their 30s, as they did.
I have a client whose husband passed away and who is now responsible for her taking care of her sister with a disability. I know that taking care of her sister, her affairs, and making sure everything is the way that it should be is a whole change in dynamic for her. Being in her 70s, she has children of her own, of course, older and fully capable, but her time now is focused and spent with her sister. It is an all-out change for her. But she feels she must.
There is Hope and Help
I feel like every time I turn around I am hearing about autistic children. And from friends on Facebook, I read about their children who are born deaf. It makes me much more aware of the struggles that families are facing today. I wish I could help them all.
Closer to home, one of my dear friends from college posted on Facebook that she was diagnosed with bipolar disorder. To think of her now as having a disability, a mental illness, and having severe high and low moods and changes in her thinking and behavior is so sad and crazy to me.
Although every person with a disability is different, and every family is unique, they share common concerns that link parents worldwide. For some, planning for an uncertain future might seem futile. But no planning at all is even worse.
If you or someone you know needs help in this area, please contact me at Hefren-Tillotson. I can be a resource to you and would be happy to help.