Let's Talk About It: Government Programs

This topic suggestion came from Seth Fowler , so thank you Seth for bringing up one topic that requires an extensive amount of thought to address. It also is one of those topics that can provide a serious amount of frustration, as it's incredibly unique to every parent and their child's specific needs...

Before I drone on, allow me to add a caveat here that I won't be discussing politics in this post - so let's set folks' minds at ease with this one. This topic transcends partisan politics, as it impacts everyone involved, no matter what country you live in. So, please don't leave comments about whatever party you prefer, or whatever candidate, after nearly 20 years, all that talk ever does is divide us further.

Now, let's dive into the topic of Government Programs, shall we? Let me grab some Tylenol and add an extra cup of coffee for this one, as there will be a LOT of paperwork involved... and I repeat, a LOT of paperwork involved... not for you this time, but for parents.

There is one common thread when a parent of a special needs child, and that's the fact that there will be a point in time when we have to address such Government Programs like SSI, Guardianship, Medicaid, and so forth. In many instances, this is the necessary evil we must contend with to ensure our kids have the support systems in place for their entire lives... or at least get them on a path to where they have as much support as we can give them. The long story is our role as a parent is to fight for what our kids need.

Here's the catch, Autism parents don't know which ones our kids even qualify for unless we fill out the forms. And we have to begin years ahead of most other special needs families as there are waiting lists, as well as other opportunities to defend our stances on specific issues for one major reason: our kid's disability is not 'seen'. Yep, we have to prove that our kids actually need a program. Not just once, but every year.

To give you an example from this past week from a parent whose profoundly autistic child has also had issues with PICA and other multi-diagnosable issues, they were denied Medicaid because there were locks on the refrigerator, which was considered a human rights violation. The parents had to advocate that their child had medical needs as well as other needs associated with 24/7 care and that if those locks were not present, their child could harm themself. The judge ruled in their favor. However, their case will be evaluated every year, before a judge again, and they will have to make their case... again.

Multidiagnosed individuals are commonplace, and every case is so unique, that it can be a slugfest as to which programs might actually benefit an autistic individual. But once those programs are found and start working for their child, parents will fight for them to continue as they work for their child.

All that said, where does a parent of an autistic child begin?

To start with, consider that there may be programs available within each locality (city), and each state, as well as federal programs available. The fun part? Trying to not only find them, as where you live determines what's available but also having to apply for them several times. The default response for many programs is 'no'. So many parents have to discover specifically why their efforts were denied, then they have the option to either apply again, or seek another option. What may be readily available in one city or state, is not available in other cities or states. And that's just in the USA.

For example, there may be 10 programs locally that we could apply for, 10 more at the state level, and a few at the federal level. This could be over 25 programs to look into and apply for our son, but he may only qualify for one... if at all. The reality is we don't know what is available for our children, unless we start early enough. And with everything else going on, that's a challenge altogether daunting.

Let's take the basics as it relates to education here in the United States. Every year autism families have to fill out the same forms that go over what their child can or cannot do. By the 5th or 6th year we essentially copy/paste the previous year onto the new year's forms, check to see if there are any updates, and apply that... then turn that in to the schools. The checkboxes that must be ticked are plenty. So many checkboxes that it becomes more important to tick the box as complete, then work with our kids... at least it feels that way.

Education for a special needs child is just one local program to address, and much of that is supported by the state and federal government. So State Laws and Federal Laws (such as IDEA and ADA) are all we as parents have to hold on to to hold people accountable.

After education, there is Guardianship. A much easier topic to discuss if you're addressing someone who has a medical condition such as Alzheimer's. But not so easy if you have a young adult who physically looks good, but has to prove that they require 24/7 care. Then SSI, Medicaid/Medicare, and any other program that helps them obtain any form of work/employment anywhere. And they all tie together as it relates to their future without the parent. Just remember, for every program there's also a renewal to continue that program every year. So, more paperwork to file in a timely fashion.

Applying for SSI or SSDI is another major hurdle that must be addressed annually, but the first application must be addressed as a parent has to provide an entire history of disability, with their doctors and educators and even the legal system getting on board. That lifetime of paperwork citing their kids diagnosis, what they are capable of, what they aren't, and what they require - has to be submitted in order to receive any benefits.

The issues of navigating MHMR (Medical Health Mental Retardation - yeah, that's still engrained into our government verbiage) - are paramount to trying to describe specifically what we need as parents to help our child... to a brick wall. We know what's needed, but there is no support available. Many parents are 'on their own' and may not have access to other organizations' efforts for support.

Here's a recent article shared by the Profound Autism Alliance - the title of the article states "There is No Help" and has over 83 references on the subject. Here's the link:

https://pubmed.ncbi.nlm.nih.gov/38963473/

Now Seth shared about his challenges for services in Texas for their child, however, the challenge here is nationwide as each state's efforts to support autistic individuals is extremely different. Some states may be a little better than others, but the challenges are the same no matter what state you live in, with the only difference being what degree of effort is required by the parent to fight for those services. And yes, it's a fight, as parents often deal with people who have no clue what raising a child who is autistic is like.

It's interesting to hear people say we've come a long way, and in some respects we have. However, in the nearly 20 years in the state of Virginia, it took our legislators the same amount of time to determine that autism is lifelong and that insurance companies should be required to accommodate. The wheels turn extremely slow with any government. Sometimes it could be justified, but often times it seems like an extra round of paperwork to submit only to be turned down.

The journey continues for this autism dad.

What topic should we talk about next?

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Shout Outs!

Sometimes an individual and organization need a bit of a shoutout, as they are making great strides in helping the autism community in some way. Here is this week's highlight:

1. Rob Gorski - my friend and fellow Autism Dad. You can find him at The Autism Dad, LLC, and hear him on his podcast The Autism Dad, available on most streaming services.
2. Autism Radio - with their flagship show HOPE Saves the Day, hosted by Paul Cimins is on iHeart Radio nationwide, and their podcast is on many streaming platforms. They help many autism families with a variety of services available nationwide!
3. MyABA.Today - a recommended directory for families to find ABA Therapists. Also, a means for families to rate and review practices. Are you an ABA Therapist? Join and Create your listing for FREE.
4. The Council of Autism Service Providers - represents the autism provider community to the nation at large including government, payers, and the general public. CASP serves as a force for change, providing information, delivering education, and promoting standards that enhance quality.
5. MySLP.Today - a recommended directory for families to find a speech therapist. Also, a means for families to rate and review therapists. Are you a Speech Pathologist? Join and Create your listing for FREE.
6. MSP Design Group - a promotional marketing company that helps you sell more of your product or service, engage with prospects, influencers, and your community, and motivate your employees.

Thank you again for subscribing and being a part of this journey.