Medicaid Waiver Programs For Special Needs Kids
Recently I’ve had many questions about a very important topic. In fact, this topic is so important that I’m just going to do an outline of it right now, but later I’ll cover more parts of it in depth. We may even hold a meeting where we can discuss this with parents.
What is this important topic? Medicare Waivers.
Why Parents Have Trouble Accessing Information on Waivers
Many of the children who come to Cutting Edge have diagnosed disabilities. We are often asked where are the best places to live when your child has a disability. There is actually a state ranking based on this, and unfortunately, the center of the country doesn’t do as well as the coasts. This has a lot to do with your particular state and how much they choose to embellish or focus on their special needs and Health and Human Services programs. Unfortunately, Texas does not rank very high here. It’s actually in the upper 40s of the 50 states. We find that parents often have trouble accessing information about, and figuring out, what the state of Texas actually does offer for these kids.
As a parent who raised two children, now young men, with disabilities, I was in that same boat many years ago. I actually heard about these programs from another parent—I didn’t hear about them from school, or from any other resource except parents speaking to parents! (Back in those days parents speaking to parents was our most powerful resource, and it still is.)
The state of Texas does have Medicaid waiver programs. Many parents assume that they won’t qualify because their income is too high. Not so! These waiver programs are not based on income—they’re based on the individual’s disability.
Unfortunately, because Texas doesn’t embellish their programs there is a very long waiting list. I can tell you that when I signed up for the waiting list for these programs in the late 90s my boys didn’t receive services until 2006. It took quite a bit of time, and I understand that the waiting list has doubled since then.
If you have younger children, or even if your children aren’t young, these waivers can help significantly because these Medicaid services go through their lifespan. Many of these waivers provide respite services, attendant services, sometimes therapy services. Some provide housing. Some of the waivers are smaller and have a smaller budget, and some are very large. The larger ones, of course, tend to have longer waiting lists.
Types of Waivers
There are several different types of waivers you can apply for. Some examples of these are the Medically Dependent Children’s Program (MDCP), Home and Community Services (HCS) and Community Living Assistance and Supported Services (CLASS) waivers. You can sign up for as many of them as you are eligible for, but you can only be on one waiver at a time. You can also change which waiver you are on. For instance, you may be able to get the MDCP waiver first, because it’s a smaller waiver with a shorter waiting list. Then if you become eligible for a larger waiver like CLASS, you would have to give up the MDCP waiver to get the CLASS waiver. Waivers have different focuses and different budgets.
Once You’re in a Waiver Program
When you get into a waiver program you will be set up with a direct service agency and a case management company. Those companies work with you together to form an annual budget. This budget comprises in-home respite, out of the home respite, day care, therapy services, all these different things. They will then put you in contact with the therapy services that contract with them, or the in-home and out of the home respite providers who contract with them, etc. You can choose to do these services through an agency, or you can choose to be your own service provider. If you go through an agency, then that agency will provide the attendants for you. If you do it on your own then you are interviewing and selecting your own attendants. That program is called Consumer Directed Services or CDS. I am in the CDS program myself, and when I started with my waiver, which is CLASS, in 2006, I chose to be CDS so I could have a handle on who was working in my house and I was able to train them. The program still supports me with payroll and that’s all built into my budget. The feedback I got from other parents at the time was that it was a little more work for me on the CDS side of things, but I was able to get better quality providers.
Ways You Can Obtain More Information on Medicaid Waivers
There are several different ways you can get more information on these programs, including how to get on the waiting list. One way is to visit the Department of Aging and Disability Services on the web at navigatelifetexas.org. Or, you can Google “Medicaid waivers Texas” and you’ll find plenty of information about them and how to sign up for them.
If you’re interested in getting on the interest list there’s a number you can call: 1-877-438-5658. That number will get you on the CLASS, or MDCP, or the Deaf, Blind and Multiple Disabilities waivers waiting lists. If you’re interested in something like HCS you can sign up for that waiting list through your MHMR or LifePath Systems Provider.
Each waiver has certain criteria that you have to meet, and when you get on the list the agencies will explain those criteria to you. When you come up on the list they’re going to make sure you meet the criteria. Again it’s not a financial criterion. It has more to do with the child or the individual’s disability and their cognitive level.
I highly recommend you sign up on these waiting lists. And please reach out to me and let me know if you want more information about these programs or if you’d like to have a further discussion. I’d be more than happy to share my experience with you. Some of my experiences have been very positive, some have not. That’s just how life is—nothing’s perfect! I think it helps for you to know that there are other resources out there for you and that there are other parents who can assist you in that process.