I have a child who has a lot of difficulties; a lot of diagnoses. This child has tried all or almost all of the medications for the various issues he has that are on the market. This child suffers from both psychological and medical issues. We have reached a point where medication is likely not going to be our answer. There aren’t many medications left we could even try.

Previously we lived in Alaska and were told that our child was at risk for being placed in long-term care. As Alaska doesn’t have any long-term care for children (or adults), they send children off to other states’ facilities to be paid for by Alaska Medicaid. Medicaid in Alaska will pay for one family member to fly down and see their child 4 times per year. You can’t really move to where your child is placed because they would lose their Medicaid coverage, as it is state dependent, and you would have to reapply and start the process all over again. We didn’t feel we could risk having our then 9-year-old, sent out of state to a facility where we could not keep an eye on our child. So we moved to the lower 48 to make sure we would have better access should that happen.

Medicaid is a state-run program. The Federal Government has regulations that govern it and helps to fund it, but the services and benefits offered, vary greatly from state to state.

In the U.S., it is impossible to buy private long-term care insurance for children. It just doesn’t exist. You can buy it for adults but not children. Your private insurance will probably pay 1-2 months but that is all. Most people don’t know or understand that for children in this country, the only long-term care insurance is Medicaid. Consider that, the next time cuts to Medicaid are being discussed. Most people are going to be lucky enough not to need this for their child. For others, it is our only choice. I never really worried about this because my child already had Medicaid due to disabilities and I thought that should we need it, it would kick in after our private insurance. That technically is the case. Sort of… Or not?…

After fighting for several years to avoid it, we finally came to the conclusion that our child, whom we love dearly, needed to go into a therapeutic residential care facility for a while to work on problem behaviors. This was not a decision we came to lightly and we had been doing everything we could to avoid it, even moving to make sure we had better access to care. The trauma that this decision puts on everyone in the family is intense. It isn’t something you would just choose to do. It is heartbreaking. It is monstrous. It is an impossible choice.

We made this huge monumental decision, and the doctors agreed with us that that was the best next step. I started calling our insurance companies to make sure I had everything they needed as this isn’t a common doctor’s office visit. My private insurance confirmed that they would pay for up to two months in a long-term care facility, at which point they would have met their contractual responsibility.

I called many different numbers for our state’s Medicaid. Everyone kept referring me to someone else. I was finally given the answer that in Washington state in which I reside, Medicaid never pays for long-term care. It is a County Mental Health Agency that pays for it.

I asked about the process of getting long-term care paid for. I was told that I had to sign up for “x program”, and then after that was done and approved I had to sign up for “y program” and sign my child up at a Community Mental Health Clinic that caters to drug rehab patients (the private psychiatrists and therapists we had been seeing wouldn’t work). Once all of that was done and we had accessed services there, we would be required to access all other state and county programs, utilize them and prove that they didn’t work for us. Each separate program having a waiting list of a minimum of 1-2 months.

After we had failed all the other programs out there, we could apply for “CLIP” (Children’s Long-Term In-Patient) beds. The waitlist for this is at least 6 months and you could only have use of the facility for 6 months. As I talked to other parents and non-profits I was told that it was almost impossible to be able to access CLIP beds despite mountains of documentation that you submit to prove your need. I also learned that they frequently don’t have a good understanding of how to help patients with Autism and it can cause even more problems rather than helping.

I was struggling to understand the implications of this news. We had struggled for so long and finally reached the end of our rope to find that the goal post had been moved to what was likely to be several more years?

My next thought was that I would try other states. My husband has a job that can transfer to other places. If we could have our private insurance pay for 2 months and move as soon as our child was placed there, we could get Medicaid up and running by the time private insurance ran out I thought.

I called about half of the states, asking questions about accessibility to Medicaid and how it is administered and long-term care facilities in that state. What I found was appalling. Several states like Utah, Texas, Kansas and New Jersey, you could only access Medicaid if your family was low income. They don’t really have access to Medicaid based on the disability of a person. They do have Medicaid Waivers to access a small amount of help, but it isn’t insurance. A woman at a non-profit in Texas went so far as to say, “Unless you have a really good reason, do not to come to Texas. Our waitlist for the waivers is about 14 years…”

Everyone I talked to, talked about the wait to obtain services. It didn’t seem to matter if your family was in crisis or not. You had to wait in line with everyone else and pray that one day your child would get off the waitlist.

Other states, we could get disability based Medicaid but the facilities in their states wouldn’t accept their own state Medicaid. Another state said they didn’t have therapeutic long-term care facilities. They just had group homes to put people and children in when the parents couldn’t handle it anymore.

It turns out, people are able to get long-term care for their children usually one of two ways. The school district doesn’t have the resources for the child and pays to place them in a residential school, often in another state because there either isn’t one in your own state or there isn’t any room in the one in your state. Then you either send your child out alone to live in a facility with strangers, seeing them only occasionally, or you split up your family and half of your family move to be near that child while the other half stays to retain residency in your original state so the school district will continue paying for it.

The second way to pay for long-term residential treatment is the most awful. That is to give up your parental rights to the state and the state is required to pay for and provide that long-term care. Unless you are independently wealthy, you likely don’t have any other choices as these places are a minimum of $100,000 a year, usually much more.

After the hopes of getting our child the proper treatment for the time needed were dashed, we scaled back our hopes and said okay, let’s just do the 2 months that our private insurance will pay. Knowing that long-term care could be a possibility for our child, I had kept note through the years for good facilities. As we called around to places, we discovered they wouldn’t take our child for one or two reasons. Many facilities won’t accept children until they are 13 (our child was 11). As we were dealing not just with psychological issues but medical issues as well and medical staff would have to be there at all times should medical assistance be needed, this was an additional reason a facility would turn us down even if they accepted children under 13.

This left us with nothing. We cannot get our child long-term therapeutic care. There are no options for us. There are no other avenues to pursue.

Where does that leave parents? Where does that leave vulnerable children? This needs to be part of the discussions being had about Medicaid. This needs to be part of the discussions that we as American’s have about helping our neighbors when they can’t do it alone. It shouldn’t be this hard to help a child. Especially when all the research shows that early intervention is the most successful.

My child has High Functioning Autism. He has a good chance of being able to live on his own and support himself one day, but only if we can get things under control and right now we can’t get access to what will help him do that.