special needs parenting · The Year of Turning Eighteen series

The Year of Turning Eighteen (part 1)

Alex with his brand new braces

Next week Alex turns 17. In preparation, we have signed onto the legal plan with Mike’s employer, and are making big plans.

Why all the hullabaloo?

Because when a person turns 18, they are legally an adult and responsible for all of their own legal decisions. That includes financial, medical, educational, and everything else. When that person has an intellectual disability, the ability to make those decisions is different, meaning that we need to determine if and what type of a a safety net should be in place.

Alex can read at about a fourth grade level. He can do elementary math and use a calculator. His emotional development is also at an elementary stage, meaning that his impulse control, long-term planning, and ability to make decisions about housing, medical needs and even grocery shopping is about that of an average fourth grader. In Michigan he can attend school until he is 26-years-old, though we are not sure if he will attend for that long, he is still nowhere near high school graduation. We still have great opportunity to maximize all of those skills in school. Realistically, he will probably always need guidance for things like informed medical consent and legal decisions. To give a glimpse of what this looks like, Alex recently got braces. His orthodontist explained the process thoroughly, and we reinforced the explanations. When trying to eat dinner the first night with braces, Alex’s teeth were too painful to chew. His solution to the problem was to remove the braces. He knew that the orthodontist would have to do that, but he wanted to return first thing the next morning and be done with the whole ordeal. If he had legal decision making capacity and transportation, I have no doubt that he would have been on the doorstep of the orthodontist well before the office opened the next morning. While I don’t blame him and we all have those feelings, it’s also important to keep Alex safe from his immature decision making process.

Then there’s the obvious issue that he cannot drive.

Thus, before he turns 18, in 372 days, we must have a safety net in place. That safety net is in the form of either Power of Attorney or guardianship. We presently lean towards Power of Attorney for Alex, which gives him greater control and autonomy to him, but the decision is not yet final.

The first step is to get his full educational evaluation completed, which is in process. From there we contact an attorney who participates with our legal benefits and get guidance on the best way to move forward for all of us.

My hope is that by documenting our process we can help other families navigate, so this is where it begins.

advocacy · special needs parenting

5 Myths About Medicaid that I No Longer Believe

Tomorrow morning a social worker is coming to our house so we can formulate Ben’s plan of care for the Children’s Waiver Program.  This is a day I have waited, hoped, and fought for for years.

I’m going through the motions, cleaning the toilet, vacuuming the floor, and closing the shower curtain because the social worker had no business in my shower anyway.  All the while I’m fully anticipating a disastrous event just as she pulls into the driveway that will leave me mortified, and last, but not least, I’m noticing a fishy smell in the house that I can’t track down for the life of me.

I finished the pre-approved paperwork to enroll Ben in Medicaid this evening, and in so doing, I’m busting some of my own myths about Medicaid.

  1. I always believed that help for people in need or with disabilities was best rendered privately, by charities and churches.  But this report shows how absurd that notion is.
  2. I always believed that Medicaid was for able bodied people who chose not to work, but it actually grants coverage to many elderly people, children, and people with disabilities.
  3. I always believed that Medicaid was just medical insurance.  However, Medicaid covers many programs and supports for disabled people that medical insurance doesn’t.
  4. I always believed that Medicaid was wasteful and exorbitant, but Medicaid is actually pretty thrifty for a government program.
  5. I always thought I would be ashamed to receive government assistance for my family.  I’m actually relieved.  By getting these supports, Ben will be able to remain in our home, something we have doubted many times because his care is so complex.  Seeing as how in the recent past, most people with disabilities lived in institutions from a very young age, I see keeping people with disabilities in the home and the community as a wise investment that is worthy of taxpayer support, and they have the right, granted by SCOTUS, to do so. 

I don’t know the details about the BCRA (nobody does), but I do know that cuts to Medicaid would weaken the supports that keep people with disabilities in the our country safe and healthy in their homes.  I consider this a worthy and valuable use of public funds.  I recognize that the ACA has many issues and needs reworking, but we must protect Medicaid, and the people who need it.

Now I’m off track down and eliminate that fishy smell.