There's an old saying, it doesn't rain but it pours, and it's particularly true when you have a severely disabled child. Along with that tragedy come others such as poverty, abandonment by the other parent, divorce, social isolation, and abuse.
Emma's and Hope's medical bills topped a million dollars by the time Hope was a year old and their story is typical of severely disabld children. The burden is so great, both financial and otherwise, many parents are forced to put their child in a foster home or a nursing home.
We are fortunate to live in a state where we have a solution, Oregon's Medically Involved Children's Program.
The threshold to get into the program is high. At the time Emma was enrolled there were 20,000 disabled children in Oregon and ony 120 of them were in this program.
The program provides two things, a medicaid waiver and a monthly budget to cover things not covered through other sources.
Medicaid waiver: For those without health insurance, they now have it. For those with health insurance, it means no co-pays, no lifetime caps, dental care, and diapers. Once your child outgrows the baby sizes, diapers get really expensive and medicaid is virtually the only insurance that pays for them.
Budget: I won't specify the amount but we can spend it any way within the program's guildlines. You can see in the photos some of the things it has provided.
1. Ceiling track lift system. As necessary as a lift system is, few can afford one. As you can see, we've had some fun with it too.
2. Roll-In shower: Technically, the program didn't pay for this. I paid for it out of pocket before I even knew about the program. It is something the program pays for, however, for children like Emma.
3. Floor mats: These provide a cleaner and safer surface for Emma. Prior to the mats Emma would frequently injure herself when she had seizures and whacked her head on the floor.
4. Caregivers: A godsend, not just because of the help but also a means to maintain sanity. Before the MICP program I was on my own for five years, during which time I rarely got any closer to adult conversation than watching preschool TV shows.
5. Supplies: Hand sanitizer, toilet paper, baby wipes, paper towels, hypoallergenic laundry detergent.
6. Equipment: Normally, things like wheelchairs, standers, etc. are supposed to be covered by your health insurance but I'm sure you can figure out what happens in the real world. Then the MICP program steps in and makes sure the child gets what she needs.
7. Home adaptations: After a minor home fire caused me to realize our older home is a death trap for Emma, I contacted our case manager. The needed home modifications are covered by the program.
8. Vehicle adaptations for a wheelchair: This is another thing I paid for out of pocket before I knew about the program. If you have a van the program will pay to have a wheelchair lift or ramp installed.