Tuesday, March 12, 2019


I used to be funnier. I began this blog a few years after my son was diagnosed, when I’d begun to see the positives in neurodiversity and learned to navigate the school system a bit. 
I had the mental and emotional space, as well as the knowledge, to bust out my sense of humor, mostly when laughing at myself or the many ridiculous aspects of bureaucracy. I sometimes even found it in me to take certain aspects of ignorance and some of our challenges a little more lightly. 

I’ve said this here a few times, but I’ll say it again: For me, this transition-to-adulthood phase is the most terrifying part of our journey so far. 

When my son was a child, I could shelter him, protect him; now he’s headed out into a world that isn’t always suited to those with different ways of thinking and being, never mind people with tender hearts. 

And I haven’t found the funny in it yet. Basically, I’m back here, like, all the time. 

Figure I — My Overactive Extrapolator–Catastrophizer Gland

Still, I want to offer this community some really important information that should have been way easier for me to figure out…but was not. 

Between the harried high school case managers and the various overloaded  agencies, not to mention the lack of communication among all these institutions, there was so much I just didn’t know.

Fellow parents were really my lifesavers here, and I was fortunate to find a few real parent “experts” along the way who laid things out for me in a lifesaving way. If you don’t have anybody like that, this information might be very valuable; and even if you do, there may be supplemental aspects. 

This list is necessarily incomplete, and I plan to write more about this huge topic as I learn more. For now, here’s what I know — hope it’s helpful. Questions welcome (as comments or PMs):

1. Designated Agencies
These are organizations selected by the state to manage certain aspects of public health. If it deems you or your child eligible for its programs (in our case, Adult Developmental Services), your local designated agency will guide you through the process of figuring out what is available to best suit your situation. 

Above all, this agency will help apply for and then administer your or your child’s State Medicaid Waiver. 

Sometimes the language is a bit different (“service agency”), but you can pretty much google your state, “disability," and “designated agency,” now that you know what a designated agency IS (I had no idea for way, way too long). 

2. State Medicaid Waiver
The State Medicaid Waiver provides funds for key services, such as a supported apartment, and help with educational, personal, and employment matters. 

When your case manager at your designated agency initiates the waiver process, they’ll create budget lines for housing, employment, and other kinds of assistance, such as education (including aspects of supported college programs).  

3. Vocational Rehabilitation
Vocational Rehabilitation is a federal-state program that promotes employment readiness for a wide array of people facing challenges, especially people with disabilities. It also helps them find and retain jobs.

Voc Rehab can apparently provide expert help with applying for SSI (see below), too. 

4. Supplemental Security Income
Supplemental security income, or SSI, is a federally determined and dispensed monthly sum that is meant to cover the expenses of people with certain medical issues, disabilities and mental health challenges.

You can apply for SSI 30 days before the age of 18, and need to call a month before that to set up your appointment. The application leans toward medical disabilities, so work with Voc Rehab to optimize your or your child’s application 

5. College Support Programs
There are many programs offered by colleges themselves and others — private and state-run — offering group living and academic support. A lot of these options are super expensive; some even add support costs on top of college costs to the tune of so.much.money. 

If financing higher education, never mind additional supports, is a concern for you or your family, investigate state-run college programs for people with disabilities — some are free or close to it!

6. Guardianship And Independence
Independence exists on a continuum. People with developmental differences may benefit from scaffolding at the outset of — or throughout — their adulthood journeys. Options here range from limited assistance with money management (known as a “representative payee”) to various forms of limited guardianship to full guardianship.

Because I’ve vowed to presume competence, I’m trying to prepare myself to face potentially devastating choices involving risk, respect, trust and safety in this arena. But at least I’m educating myself and my son about our options.  

7. Able Now Account
This type of bank account allows you or your child to deposit funds that will not count against you/them in determining eligibility for various benefits, such as EBT, Medicaid, SSI, and the State Medicaid Waiver. 

It’s still early days here, so we haven’t navigated all of these processes (and I know there are more things to figure out: I’m looking at you, health insurance). I'm not even sure which will be appropriate — I’m just glad to know they exist. 

And now so do you. Good luck!!

Thanks and love,
Full Spectrum Mama

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  1. I am a LMSW.... a classically trained Social Worker who has worked in the healthcare industry for 30 years. You would have thought I'd be able to fly through the system, navigating with the greatest of ease when my daughter was diagnosed. You'd be oh-so-wrong. There is so much left unsaid, so much unknown and I agree, parents have been the best source of information and support. Thank you for all you do to help that effort - it matters so much!

  2. I bookmarked this, he's only fifteen but transition is coming! Thanks for this!


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