My wife and I are both involved in several online forums for special needs parents and caregivers.
Routinely, we here about people saying something along the lines of “Well, sign up for _______?” Or “Why are you using ________?” In almost every case these are about different government, and sometimes non-profit, programs. However, often confusion, accusations, and frustrations frequently fly when statements like this happen. Why is that?
Well, for the simple reason of different states have different programs.
How funding effects programs
So lets give a general description of how the federal government funds programs.
The federal government distributes money to the states, earmarked for certain functions (food stamps, housing assistance, assistance for disabled, development of roads and infrastructure, etc).
In many cases, the government will outline certain requirements needed to be met by the states, but the federal administration of the program is handled by the states themselves. The states will sometimes be required to add additional funds to the program often labeled as “matching” and sometimes they won’t. Some states may add additional funds and services on top of what the federal government requires.
Here becomes part of the issue. Two states, even if they are geographical neighbors, may get the exact same funding, but because they are managed by different states, they might
- Call their programs by different names
- Have different requirements (as long as the federal requirements are met)
- Provide different services (as long as the federal requirements are met).
A perfect example of this is how Tennessee, the state we currently live in, offers something called TennCare. TennCare is the state program for supplying Medicaid and Medicare which the federal government funds. Drive just 30 minutes east, and you are in North Carolina. They will not have TennCare, but will have their own state program. They are designed to do normally nearly identical things, but where you sign up, how long their wait list is to be approved, etc will vary greatly.
Individual Programs
Additionally, some programs will be created and funded solely by your state, or even your county.
When we lived in Florida, they had something called the McKay Scholarship. It was designed for special needs students to help pay for private schooling if a parent felt that their current school wasn’t helping their child enough. We used this with one of our sons because of that very problem. However, it was specific to Florida, and when we moved to Tennessee, we no longer had access to that program.
We do now have access to other programs however, such as the the Katie Beckett waiver. This program was named after a person who was very active in helping the disabled community get funding to support their needs. As such, other states may also have a Katie Beckett program, however, they are once again managed by the state, so how many slots are open, what funds you may or may not have access to, etc, will very based upon your location.
Likewise, when we moved to Tennessee, there was a program that was specific to our county which provided special funding for special needs families. We couldn’t access that if we moved just a county over.
So, don’t expect everyone to know about every program, as there will be far too many. Instead, learn and reach out about programs in your area to determine what is available to you, and how you can use it.
The best place for the best programs
Because programs will vary so much, you must assume that there isn’t a “best place.” Instead, focus on doing the best, based upon where you are. Sometimes I will hear from someone in one state; “Oh, I hate _____. They don’t have any support…” and the person next will respond, “Have you tried_____ or ____ programs.” And the person didn’t know about those programs.
So I’m not sure there is a best place. All places will have a certain amount of frustration. As we’ve been going through the process with our sons we realize that each program has their own administrators, and each person will have their own personality. We also see how busy some of them are, and they are doing their best. Your results may vary simply based upon who you get to handle your case, and where on the severity scale you fall, and how many other people are working through the process at the same time.
We’ve learned that being friendly and helpful and getting people the information they need as soon as possible, seems to help make for a smoother process. We realize we’re all human, and subject to frustrations and mistakes, and the administrators are no different than us. That has seemed to help us get through the process easier than other people.
Other things to consider
Programs change over time, so even if you were denied into a program a few years ago try to reapply or check and make sure the requirements haven’t changed. If are denied and there is an actual person you can reach out to, see if you can find out why you were denied and is there another program that they know of that might work for your situation.
Cases in autism are rising and services are being overwhelmed. Employees are being overworked and things will fall in the cracks or take longer than normal. Be patient with your service providers and case managers. I always ask them to let me know if there is anything else they need from me. I also ask about how long will something take to start/process that way I know how long to expect and if it takes longer I typically wait an extra week and then check in with them. Typically the conversation goes, “Hey _________. I hope everything is going well with you. I was just checking in to see what the status is on (insert child’s name)’s _____________. Is there anything else you need from me?” This is a very non-confrontational way to gently remind them about your child and typically the squeaky wheel gets the oil, especially if they are not too aggressive or pushy.
