Wednesday, June 10, 2015

A few suggestions on getting help for children with disabilities

Have you ever been to the Facebook page, "Shut up about your Perfect Kid!" If your child has a disability, this page is the place to be. First, they post questions from real people, with real problems. Second, the group itself tends to be a generally supportive group, and a great place to get information. Every once in a while, you get a Cranky McCrankerson commenting, but it's generally a really great place to participate in. If you need support, I would highly recommend them.

That being said.............

The reason I posted this question was because I wanted to address some of the statements I read in the comments section of this facebook post. I'm no expert on the world of childhood disabilities, but I've had to wade very deep into the waters. What I've noticed is that there are services out there aren't exactly advertised. As such, I wanted to address some of the statements I saw in hopes of spreading some information on WHAT services are available to you, and to clear up some incorrect information I saw posted.

The first thing I wanted to address in the comments was the assertion that the public school system can't "diagnose". Now, in term of what this person was asking... yes, that's true. A public school teacher in the United States CAN NOT diagnose your child. Might they be right? Perhaps. I can tell you that I've seen children that I've thought probably had some flavor of autism. That being said, my opinion will get you a big fat nothing in the world of autism. It won't get you services, and it won't get you a true diagnosis. That's because I'm not licensed to diagnose people with disabilities, and neither is that teacher. HOWEVER.........

Your public school psychologist CAN both administer, and give your child an autism rating on the spectrum. They are indeed qualified to do this. In fact, if that school psychologist were to leave the school and go into private practice, they could 100% diagnosis your child with autism. What a school psychologist will give your child is what's called an "education diagnosis". What does this do for you? It gets you services. Usually that means speech, special education services, and possibly even occupational and physical therapy. If your child is more severe, they might be placed in either an autism classroom, or placed in an actual autism school outside of the public school system. It all involves whether your child is in the "least restrictive environment"- which is what the school is required to do by law.

So, here's where this gets a little dicey. Let's say that you have a child who rates mild to moderate on the autism scale. You've went to the school, they've given your child an IEP, and they want your child in a special education classroom. The "least restrictive environment" for your child might not be the autism classroom. They might not need to go to a specialized school outside the district. Perhaps the schools believe your child doesn't need any other services. While they would get something like ABA therapy in other settings (autism classroom, or an autism school), they might not get it as much in a special ed class. Perhaps they don't think he or she needs occupational therapy. This is where your medical diagnosis comes in. To add, I'm NOT insulting the school system. My daughter's SPED team has been nothing but a delight. All I'm stating is how this often works. It involves many things, including: laws, resources, and funding.

A "medical diagnosis" will get you more services. I'm going to list a few of them below:

1. Additional services in general. Does you child need ABA therapy, or occupational therapy? Here's where you might get it much more easily.

2. Medicaid, and Medicaid waivers. If your child needs ABA therapy, or some other therapy, medicaid can be your life line.
  • Often, your private insurance will not COVER ABA therapy, even if they say they will. Medicaid can help with that.. especially if you can get a waiver, which I'll get into a bit in a moment.
  • Did you know that Medicaid will cover pull-ups and diapers past a certain age? That's right, they will often cover incontinence supplies. Just think about all the money THAT will save you.
  • Did you know that Medicaid can cover traveling expenses for your child? They'll often even pay you back for gas to doctor's appointments.

    3. Medicaid Waivers. The bane of my existence. So very difficult to get, but so worth it if you can obtain one. I'm in Virginia, so I'm not sure if everything applies, but I can tell you this..if it does, fight for it. In Virginia, there are three main waivers:
  • ECDC waiver- Elderly or Disabled with Consumer Direction waiver. This is the one my daughter is in the process of getting. It means she will get straight Medicaid regardless of our income. There's also some financial assistance it give to the family each year for home improvements for your child. An example of what constitutes as home improvements? Sensory items- trampolines, swings, locks? I heard of two people that had a pool put in their yards for their child because of this help. Seriously. Check it out.
  • The ID and DD waiver- Intellectual disability, OR the Developmental Disability waivers. In Virginia, we have waiting lists for these two waivers. That's why if you can get that ECDC waiver.. do it.

    *Now I know that I'm referring to what the state of Virginia offers with Medicaid. It might not be the same in your state. What I do know is that most states have some kind of waiver, or services like this for disabled children. Call your local social services. Call your community service boards. Get in contact with your local chapter for autism support and awareness, or whatever local group is around for the particular disability your child has. Also, find a Medicaid state approved hospital, and take your kid there if you can. Ask if they have a social worker on the staff that can help you with this. I believe ALL states MUST offer at least EPSDT (The Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit). Don't let the name fool you either, it's for any child under age 21. As per the site:

    "The Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit provides comprehensive and preventive health care services for children under age 21 who are enrolled in Medicaid. EPSDT is key to ensuring that children and adolescents receive appropriate preventive, dental, mental health, and developmental, and specialty services."

    4. Social Security- Oh, yes. You NEED a medical diagnosis from a mental health professional, or medical doctor to get SSI (Social Security Income).
  • Another thing that's a really huge pain in your tail. Very invasive, and you have to jump thru hoops.
  • You might make too much money. Their threshold is pretty ridiculous. you can't make over 40k for three people in your home.
  • Even if YOU DO make too much money, if you can get them to look at you.. here's why this works out for you.
  • a. Even if they decline you because of lack of income necessity, they might very well approve or acknowledge the medical disability.
  • b. That means your child is on file for being disabled.
  • c. That means that when your child is older, they'll have their medical disability on file.
  • d. Once your baby hits 18, then they can apply for themselves. They'll have a disability on file, and your income isn't SUPPOSED to to come into play at that point. So even if rejected for income, which is annoying, there's still some positives if they admit that your child has a medical disability. I'm sure they'll make your kid jump thru hoops AGAIN.. but there's a history now. That can't hurt.

    *I actually discussed this ^^^ with a SSA rep in person. This is what HE told me.

    Most of the things I discussed aren't exactly advertised. Regardless if this all applies to you or not, I think there is at least some valuable information for any parent looking at how to get services for their child. If I could give you one single piece of advice, I'd tell you to get BOTH diagnoses. Call your local public school, and ask that your child be evaluated. In the meantime, call your primary doctor and get a referral to a developmental pediatrician at the same time. Wait times (at least in Virginia) are long- better that you do it sooner rather than later. So, get them BOTH.

    Also, please don't get discouraged. Expect a LOT of phone calls, a LOT of home visits, and a LOT of run around- at least from the government aspect of this. The public school was actually amazingly quick at getting my daughter evaluated. Just saying that as frustrating and time consuming as it is, it can really pay off in the end with getting you help and services for your child.

    In closing, DON'T feel guilty about using these services, and DON'T let others make YOU feel that way. THIS is what these sort of things are for. If anyone gives you grief for getting assistance, I would suggest you ask them if they want your child to get help NOW, or do they just prefer to pay for your child for the rest of their natural lives? Truth is that many of these children have a high probability of having some level of independence if help is offered early. That usually shuts them up very quickly. Also, even if the above statement doesn't apply to your child, you can always ask them how they feel about children suffering because they have a problem with protecting those that can't protect themselves.

    This isn't a game for political idealogues. This is real life, and these kids need help. I used to feel guilty about public assistance too, but I got over it real quick. If you feel bad about being on the government dole because of your special needs kid... DON'T. If you happen to be reading this blog, and this is how you feel^^^... go away. No one anticipates having a special needs child. Just be thankful it's not you, and have a little compassion for those who are less fortunate than you.

    *Steps off my soap box*

    I hope that some of this information helped some of you, or at least cleared up a few things. If you have any questions, please feel free to comment. Any good information about this topic is also much appreciated.