Medicaid Waiver Programs For Special Needs Kids Part 2
We’ve had some discussions lately about the Medicaid waivers in the state of Texas. I’ve gotten a lot of positive feedback from these, for explaining what they are and how they work and especially for giving the parent perspective on these waivers. If you’re just tuning in, I did a previous video and blog about what these waivers are, and what waivers are available.
Today I’m going to talk a little bit more about the process. Last time I told you about a very important website: medicaidwaiver.org. If you go there you find information specifically about the waivers available in Texas. It will also tell you about the waiting list that is in place for these waivers—which, as I said is lengthy, although the length depends on the particular waiver.
Types of Waivers
There are a couple of waivers that are a little more accessible. One is MDCP or Medically Dependent Children’s waiver. That waiver is only available if your child has a serious medical condition. In fact, if you look on the website it says the purpose of this waiver is to “support family caring for children who are medically dependent and to ensure the transition of the child into a nursing home.” It’s not that they think your child is going to go into a nursing home, but if you have a child with a heart condition or some kind of serious condition that requires medical treatment, that waiver is accessible to you. You would apply for that waiver through the Department of Aging and Disability Services. Once you come up on the waiting list they will evaluate your child’s condition, so if you’re unsure you can always sign up and see what they say. The worst thing that could happen is that they’ll tell you that you’re not eligible for the waiver. Sometimes the wording on these things is very ambiguous. I know that’s frustrating, but it doesn’t hurt you to sign up even if you’re not sure. I know when I signed up for waivers a long, long time ago, children with autism were eligible for this waiver, but they’ve changed some of the criteria since then and tightened it up a little bit. But if your child with autism has a life-threatening condition like severe asthma or a heart condition, you’re probably not eligible for that waiver.
There’s also another waiver that is a little more accessible than some of the larger waivers, and that’s called Texas Home Living. I have not participated in that program myself, but I have talked to many families who are able to get access to that one quicker than some other waivers. It offers essential services and support to people with an intellectual disability or a related condition, who live in their own home or their family’s home. This is another waiver you might investigate to see if it is helpful for your family.
The waiver that I’m most familiar with is called CLASS, which stands for Community Living Assistance and Support Services. This one has a fairly lengthy waiting list—I think it’s about 15 years. This one is not based on intellectual disabilities, so those who have higher-functioning conditions that don’t qualify for an intellectual disability will qualify for CLASS! And this is one of the waivers you can keep throughout your lifespan. It provides home- and community-based services for people with a related condition as a cost-effective alternative to an intermediate care facility for individuals with intellectual disabilities or related conditions (which they call an ICF). A related condition is a disability other than an intellectual disability that originated before the age of 22 that affects the ability to function in daily life. Many of our individuals with high-functioning autism don’t have an intellectual disability, but they do struggle with their independence in life. This is one of the larger waivers, so it has a longer waiting list.
Reminder About Waivers
I want to remind you that you can only be on one waiver at a time. If you’re on Texas Home Living and then you become eligible for CLASS, you lose your Texas Home Living. But honestly, that’s okay because CLASS will cover everything you need.
Therapies Covered By CLASS
For me as a parent, CLASS has covered all the therapy services—and I’m not talking about things like speech therapy, occupational therapy or physical therapy. I mean things like horseback riding, music therapy, aquatic therapy, recreational therapy, and other types of programs. It also pays for respite and attendant care. This is a waiver I’m very familiar with, so if you have any questions please let me know.
Waiver Waiting Lists
The one I’m still on the waiting list for is HCS, or Home and Community Services. This is one of the largest waivers, which is why it has such a long waiting list. I think the waiting list for HCS is honestly about 25 years. For those of you who are already on this waiting list, you’re moving up slowly! Just like CLASS, this waiver only opens up when people leave and open up their space. HCS provides individualized service and support to people with intellectual disabilities, so you do have to have an intellectual disability for HCS. If you do not have an intellectual disability you will want to stick with CLASS. But remember, they’re always reevaluating these programs and sometimes the criteria changes. Maybe in the next 10 years, you won’t need an intellectual disability to be eligible for HCS. Who knows? So it never hurts to go ahead and sign up, especially with a waiting list of 20-plus years! You never know when things might change. But right now HCS is “support to people with intellectual disabilities who are living with their families in their own home, or in a community setting such as a small group home with no more than four people.” Local authorities provide service coordination for this waiver.
Waivers To Help With Housing Costs
We look at HCS for respite care but also for housing. This waiver helps to pay for those housing costs. It’s also important to note that HCS is the one waiver that you apply for through MHMR or through LifePath systems. The other ones are through DADS (Department of Aging and Disability Services).
Once You’re Selected From The Waiting List
Once you come up on the list you are notified through the mail. Make sure you keep your mailing address and phone numbers up to date with these programs! They will send you a letter and set up a meeting with you. You will have to pick two different agencies to work with, a direct service agency, and a case management company. They will set up a meeting with those agencies and you, they’ll explain how the waiver works, and then they will set up a budget for you. Usually, it takes a little time to get that budget through the state and sometimes it’s remanded back. It’s usually about a three month wait for services to start. You’ll be notified of a start date for your services once your waiver has gone through.
Every year you will meet with those same service providers to review your budget. These service providers will also be in touch with you throughout the year. They do quarterly meetings where they check in and see how things are going. They have a structure set up. Is it smooth all the time? No. It’s like any business or agency. Sometimes you have great service providers, and sometimes you have people who move through that system who just aren’t as skilled as others. It’s very important that you educate yourself and remain aware of what your rights are, and what you are eligible for with those waivers.
I hope this answers a few more questions! Feel free to send me messages, because I will reach out and do another video and blog if you have further questions!
Kate Lundgren
