Medicaid Mania, part deux

Since I got a lot of questions and interest in the last medicaid post, I'll give some tips here:

1. If you don't know where to start, start by visiting your state's government web site. Mine is kentucky.gov, and every other state has a "state name" dot gov. Texas.gov, Montana.gov, Northcarolina.gov, etc. Once there, I have found it nearly impossible to just navigate around the web sites and land upon anything about waivers, so the easiest way to find something is to just go to the search box and type in "Medicaid Waiver." That should bring up a lot of informations about different kinds of waivers.

2. There are usually several different types of waivers in every state. You might find an HCB (Home and Community Based) waiver, or a Katie Beckett ... there are lots of other names, but those two names are pretty common ones. Read all you can find about the requirements for the waivers before deciding which one or ones you might qualify for. Some are only for adults or only for children, some require an intellectual disability, which most people with Spina Bifida do not have, but up until a certain age, they can't assess IQ level, so sometimes they look at "developmental delays." That can mean delay in walking and such, so that can work.

3. Don't get too scared by language you find that says the child has to be at a "nursing home level of care." These waivers were started to keep children and adults who have special needs out of institutions, which doesn't happen as much anymore in general, and obviously very rarely for SB. So most states interpret this to mean that if you were suddenly hit by a bus tomorrow, your child would need a lot of extra care, some of which might even be medical. Obviously, if the child has a trach, vent, feeding tube, etc, you will easily qualify. Cathing is also one big thing that can help you get qualified--not that you're going to start cathing if the child doesn't need it specifically to get a medical card, lol, but if you are cathing the child, this will help. Otherwise, what they are looking for is the child's delays and how they are not independent (to an extent further than other children that age). He does not use utensils properly to eat, he cannot get in and out of the bath by himself, he does not brush his own teeth, he is not potty trained, he needs help getting up and down the stairs, he needs a lot of help calming himself when upset, he does not play with other children ... things like that. Now, some people might take this too far and either lie or not teach the child to brush his teeth to get the medical card :) but what I'm saying is that it is sometimes in the best interest of the child, even though it doesn't feel good for the parent, to point out every little thing he or she is delayed in so they can fully see the extent of the child's needs.

4. So when you've done your research, you might get a better understanding of the process you go through in your state to obtain the waiver. Sometimes/usually you start with a home health agency or a state agency on aging and disabilities. Your state's web site might offer a list of places to call in your area, but if not, one thing you can do is just google home health agency and your city to come up with a list. Some have web sites, and some will tell you if they work with the waiver program. Others you may have to call up and ask if they work with a waiver program. If they have no idea what you're talking about, they don't. :) But if you know that's the right place to call, simply ask to speak with someone about the waiver program and ask for an assessment.

5. Many states have two options: Standard (a home health agency provides respite workers for you, or you can have the person you want to be your respite worker to apply to work for the home health agency, and they'll only work for you), or CDO (Consumer Directed Option, which means they give you a budget and they handle all the money, but you can hire and fire whoever you want, and you pay them whatever you want ... you make all the decisions).

6. So someone will come out to do an assessment of the child, and you'll tell them all the things I talked about in #3. If the child qualifies, they will take care of getting you the medical card, because you need medicaid to cover the home health services ... making sense now? You may still have to go to the Medicaid office (here, it's called Community Based Services) and provide income information, but for a child, they look at the child's income, not the parents'. Most children of course do not have income, but if you get child support or SSI or have some sort of trust for the child, that could cause problems.

7. Now, there are some states, such as Texas, that require you to actually spend a night in a nursing home to assess whether the child really does meet a nursing home level of care. This seems to be rare. I've heard that New Mexico and Arizon are particularly shoddy in the waiver department. And there are many states, such as Tennessee, that have very long waiting lists. A long waiting list tells me that at least that state is making it easy for people to know about and apply for waivers. Here in Kentucky, if you're one of the few who finds out about the waivers, you can usually get one within a couple of months. Neither is a great situation.

8. Remember, this is a state thing, unlike SSI, which is federal and has the same rules from state to state. So each state has its own rules and programs. Oh, and it was also brought up that, because this is a state-by-state thing, if you move to a different state, you have to start all over again. When we moved to Tennessee for like a minute two years ago, we would have had to move to the bottom of the waiting list. Thank goodness we didn't stay there and could keep our Kentucky medicaid--I would have just died if all that work had meant we'd lose our card after having it for only 6 months!

If you have any other questions, or want me to help you find information about your state, let me know and I'll try to help.

Signed,
The Medicaid Maniac