Medicaid waivers allow children with disabilities to qualify for services without considering their family income. This is a game changer for families who know about it.
The Legal Side
In 1982 Congress passed the Tax Equity and Fiscal Responsibility Act (TEFRA). This allowed states to make medical assistance available to certain children without counting their parents’ income. The disability allowed the eligibility, not income. If they need more services, they can apply for home and community-based service (HCBS) waivers. This means that if your child’s level of care would qualify them for Intermediate Care Facility, Nursing Facility, or Hospital level of care then they could qualify for Medicaid. Many children with disabilities meet this threshold but because parents are used to providing this care, they don’t realize it.
In 1999 in the Olmstead decision, the Supreme Court determined that “unjustified isolation…is properly regarded as discrimination based on disability.” This means that it would no longer be acceptable for states to put people with disabilities in institutions and isolate them if these people could live their life outside of institutions with support. This means they would be able to work, go to school, live with their families or independently, and have economic independence with reasonable modifications.
In short, states are required to provide community-based services to people with disabilities that would qualify for institution-type care. States can’t just put someone with disabilities who needs care in an institution without offering other services. So, you can keep your disabled child at home, but how do you pay for it? Many families (like mine) want to keep their children at home NOT have them institutionalized, but the cost of caring for them is high and we need help.
Here’s Why They Did It
It would be great if they created programs to help the disabled just because it was the right thing to do, but that is not the real world. The real world is money. In most states, a parent could put their child in a hospital or institutional care at the expense of the state if they wanted to and this cost would be astronomical to states. In 2009, The National Council on Disability estimated the average cost of institutionalization was $1888,318 while the average cost of Medicaid-funded home care was $42,486. Before TEFRA, children with disabilities would need to meet the state’s income criteria or enter an institution or the foster care system to qualify for Medicaid services. Overwhelmingly parents would not hospitalize their children, but they could. The waivers create a win-win situation. Children stay at home with assistance and parents do not hold the entire burden of the cost. Our family income would have prohibited our child from having state assistance but it would have bankrupted us (even with great insurance) to pay for all of her needs and care while working full time.
What It Meant to My Family
Qualifying for a waiver allowed Medicaid to help pay for copays, cover PT/OT/Speech once we met our limits under private insurance, pay for equipment and supplies that private insurance deemed unnecessary, and open up other support programs for her. We were assigned a case worker that met with us monthly to set goals and determine what she would need to help her be independent and improve her quality of life. We were given money to pay for someone to come in to take care of her for a few hours a week so we could get a break, this is called respite care. These things were a lifesaver for our family. Not only did it help us provide what our daughter needed, but it also gave us a network of people to reach out to when we needed help or had a question. The quality of life for our entire family increased.
Qualifying was not easy. First, TERFA waivers are not advertised. You have to ask a health official about qualifying for a waiver or hope someone mentions it to you. Fortunately, we had a nurse mention it to us during a hospitalization. Second, the paperwork is hell. You will need to prove the level of care your child needs. This means, reports from all of their doctors, therapists, and hospital stays. Parents need to describe the level of care they give at home. This is more difficult than it sounds. As parents of children with disabilities, we don’t think about everything we do to keep our children healthy and active, we just do it. Third, it is a long process and if you are missing something from the paperwork or if it is not all submitted together, there is a good chance they will not even look at your application. In all fairness, they are swamped and will work on the completed application first since they can move that child’s application forward.
I struggled with the description of care my daughter needed because I didn’t want to make my child sound like a burden. My advice: Get over it. Explain every little thing you do for your child. Your state’s health department will make the determination and they will not read between the lines for you. There is a big difference between reporting “I get my child ready for school every day” and “My child is completely dependent on assistance for all daily activities. In the morning, I have to feed her through her g-tube, give her three medications, provide a nebulizer treatment, change her incontinence supplies, put on her ankle braces (AFOs), dress her, brush her hair and teeth, put her in her wheelchair and strap her in so she can be transported to school.” The former will result in a waiver being denied, the latter allows the agency to have a better description of the care your child needs.
Where to Find Information
TEFRA is not a mandate, states choose to amend their Medicaid plan to cover these services. This means each state sets up its definition of institutional care and how it will administer the program. Check out Kid’s Waivers to find programs in your state.