Articles, Newsletters, Podcasts, and Video

Senate Fails to #StopTheShock

By Noor Pervez / 2022-09-28
Posted in

ASAN is heartbroken and furious that the United States Senate has failed to ban the use of the electric shock devices used at the


Let’s Improve Public Benefits Access

By Eric Jorgensen / 2022-09-27
Posted in

I hope September went as well for you as it did for me. The biggest “win” came towards the end of the month when my son received his SNAP EBT card. I count this as another big step towards his future independence. My hope is he’ll eventually be able to live on his own, using his ABLE account, TrueLink Card, and SNAP benefits to provide for himself.


You’d think (well at least I did) he’d be eligible as soon as he turned 18. But I was told to wait until my son was 23 to apply for his SNAP benefits by the State of Maryland’s Health and Human Services Department. I don’t know what was so magical about his 23rd birthday, but it worked. I can understand why they may not consider him to be his own “household” while he was in school, but he’s met their criteria (as I understand it) since he was 18.


Supplemental Security Income (SSI) and SNAP are not enough to sustain yourself, even if you are lucky enough to have a housing subsidy. I don’t see how he would be able to live alone. This is why so many of us parents plan to have our kids live with us for the rest of our lives. 


I count myself fortunate because I can continue to subsidize his lifestyle after I’m gone. Besides my life insurance policy, he’ll receive 55% of my pension for the rest of his life. He’s also able to stay on my health, dental, and vision insurance plans. I wish more families were able to do this. Sadly it’s currently limited to retiring military, Federal Employees, and some State/County employees. I don’t know of any large corporations offering this, but I’d love to see that change.


I believe our current social safety nets will not live up to the demands placed on them as more and more individuals with disabilities, and their families, choose to self-direct their services. Yes, some of this can be addressed by solving the un/underemployment issue, but this isn’t a miracle cure. There will always be a percentage of the population who needs significant amounts of support. And there is another percentage who will fall on hard times and need help while they get back on their feet.


It’s probably a pipe dream, but I’d really like to see the United States offer some type of Universal Basic Income to individuals with disabilities. I’d want it to be at least 200% of the Federal Poverty Level, and set to increase every year equal to the rate of inflation. That means a single individual with a disability would be guaranteed to receive $27,180 this year. A far cry from the $10,092 someone gets if they are receiving the full Federal SSI benefit in a State that doesn’t supplement the Federal benefit.


This would require additional changes to SNAP, Medicaid, and Affordable Housing programs. Since it’s extremely unlikely this will ever come to pass, I would like to see automatic enrollment in SNAP and Medicaid when you qualify for SSI become the national standard. It’s hard enough to prove to the Social Security Administration that you’re disabled, making you jump through additional hoops is (to me) ridiculous.


According to the Social Security Administration, 35 States and DC will automatically enroll you in Medicaid once you’ve been approved for SSI. You need to file a separate application if you live in Alaska, Idaho, Kansas, Nebraska, Nevada, Oregon, Utah, and the Northern Mariana Islands. If you live in Connecticut, Hawaii, Illinois, Minnesota, Missouri, New Hampshire, North Dakota, Oklahoma, or Virginia you have to file a separate application AND meet the State’s eligibility rules.


A law was passed in 1997 requiring applicants and recipients of SSI to be given the opportunity to file a food stamp application at the SSA office when applying for SSI. This doesn’t help those of us who apply online, but at least it’s something (if the offices are telling applicants). 

Back in 2004, Social Security, State agencies, and the Food and Nutrition Service started testing Combined Application Projects (CAPs). In theory, if you are a single-person household you would be able to complete a shortened SNAP application without an interview. Here is a list of the participating states I’ve been able to find – Florida, Massachusetts, South Carolina, New York, Texas, and Washington state. It looks like Michigan and Massachusetts have started using a CAP as well. If you, or anyone you know, lives in one of these states and has experience with this I’d love to hear your thoughts. 

The bottom line is we need help. Filling out applications is tedious, especially since none of the agencies talk to each other. You can’t just fill out a master document for SSI, SNAP, housing vouchers, etc. I will point you in the right direction and make sure you have the applications you need, but I don’t complete them for you.

Maybe this is a business opportunity for someone. You’d have to work out the liability issues, I would definitely recommend putting some type of error and omission insurance in place. If there is anyone out there already doing this please connect me, at I would love to explore opportunities to collaborate and send people their way.



Disability Benefits and Out of State Moves: What you don’t know COULD hurt you

By Eric Jorgensen / 2022-09-22
Posted in

I’m betting we all know someone who has said they are waiting until their kid(s) are out of high school to move. And, if you’re like me, you probably said “that makes sense”. After all, high school marks the end of an era and you want your children to be with their friends. It can be a really tough time to start over.

When you don’t have a child who may qualify for a State Medicaid Waiver this is all good. However, if you’re child is going to need, or has already been approved for, the State’s Medicaid Waiver I encourage you to think twice.

Medicaid services are state-specific. At this time (September 2022) there are no provisions to help families transfer their benefits from one state to another unless you are Active Duty military. According to a Military OneSource article (17 July 2020), the Department of Defense Liaison Office “has 37 states with either no waiting list or with policies that support military members on the waiting list in their state of legal residence while on active duty.”

But what if you’re not military, or you are but you don’t live in one of these 37 states? Then if you were to move you would need to start the process all over again. This would begin with you applying for the Medicaid Waiver in your new state and waiting to see if you would be approved. There is no guarantee your child will qualify because every state is allowed to set its own standards.

For example, some states (like Alabama and Connecticut) may require an Intellectual Disability diagnosis with an IQ lower than 70 to receive support. Connecticut has also set a lower asset maximum for Medicaid of $1,600 (single person). These are just a few examples of things parents need to be thinking about when considering a move to a different state.

Currently, there is no tool I’m aware of that will allow you to compare benefits between states online. If you know where you want to go, or you’ve at least narrowed it down to (3) states, you may opt to work with me using the “Too Many Moving Parts” package. I believe Vitalxchange may also have VitalGuides who can help, but I’m not 100% sure.

I encourage you to not let taxes or cost of living be the sole deciding factor (I acknowledge both are important). I understand sometimes you don’t have much of a choice about moving if you want to keep your family together. I was a geographical bachelor for 5+ years, I wouldn’t wish this on anyone. Don’t wait until after you move to figure things out. Do your homework, or hire someone to do it for you. Make sure you understand what is, and isn’t, available where you are going.


Making Voting Accessible Means Millions More Votes

By AAPD / 2022-09-15
Posted in

Lilian Aluri, REV UP Voting Campaign Coordinator

This blog was originally posted by US Vote Foundation on their blog and reposted with permission as part of a series of blogs. The US Vote Foundation


ASAN Statement on Final Public Charge Rule

By Noor Pervez / 2022-09-15
Posted in

The Department of Homeland Security (DHS) recently released their final rule on the public charge law. The public charge law requires DHS to keep


Autistic Self Advocacy Network Comments on Title IX Regulations

By Meredith Bartley / 2022-09-13
Posted in

These comments are available as a PDF here.

September 12, 2022 
Alejandro Reyes
U.S. Department of Education
400 Maryland Ave. SW, PCP–6125
Washington, DC 20202

Autistic Self Advocacy


Disability Garrison – Episode 15: Alternatives to Guardianship with Allison Hall and Ashley Mathy

By Abby Burch / 2022-08-30
Posted in

Listen Now or on Your Favorite Podcast Platform

The Problem

When a person turns eighteen, the government sees them as an adult. They are expected to make decisions for themselves. But people with disabilities may need a little extra support in …

The post Disability Garrison – Episode 15: Alternatives to Guardianship with Allison Hall and Ashley Mathy first appeared on GT Independence.


Autistic Self Advocacy Network Comments Re: SAFE Initiative Call for Testimony

By Meredith Bartley / 2022-08-29
Posted in

These comments are available as a .pdf here.

The Autistic Self Advocacy Network (ASAN) appreciates the opportunity to provide recommendations on the contents of


Trust, but Verify

By Eric Jorgensen / 2022-08-26
Posted in

As consumers, we owe it to ourselves to be informed. This goes for everything from healthcare to services for our children. Personally, I find it extremely tempting to take things at face value. Who has the time or the bandwidth to fact-check everything? If you can’t trust who you’re working with then why are you with them?


I’m not suggesting you question everything. However, I do believe if you are working with a professional for the first time it may not be a bad thing to ask them to “show their work”. For example, if you are getting life insurance and the agent quotes you a number, I think it would be helpful to understand where the value came from. The same is true when you are meeting with your child’s IEP team and they are proposing goals (this was an area I feel I could have done much better at). Dig deeper into what the goals are meant to accomplish, and how are they going to help your child after they leave school. 


This is especially true if you are talking to anyone about public benefits. Over the years I’ve found many people don’t understand that public benefits have different rules and eligibility requirements, even when they seemingly work together. For example, Medicaid and Supplemental Security Income (SSI). In most states, you will automatically be enrolled in Medicaid when you qualify for SSI.


However, these are separate programs. It’s possible for you to lose your SSI and keep your Medicaid. Especially if you start receiving Social Security Disability Insurance (SSDI) because you qualify under the Disabled Adult Child Benefit. Sometimes you may lose your SSI because you are working and earning too much. This doesn’t mean you can’t have Medicaid. Some states have programs allowing employed individuals with disabilities to buy in.


SSI is a Federal program, meaning it’s pretty much the same in every state. Some states will supplement the benefit, but generally speaking, if you qualify in one state you will qualify in every state. This is NOT the case with Medicaid. Every state administers its Medicaid program differently. You need to be very clear on what the eligibility requirements are if you are considering a move.


Even temporary relocations, like going out of state to attend college, can be perilous. Medicaid may not pay for medical care in the new state. If you are receiving benefits from a Medicaid Waiver you can expect those benefits to be put on hold. And if you are receiving SSI you will want to make sure you are clear on what the requirements are for a “temporary absence”. You don’t want your state to interpret your situation as you changing residency.


But you may not get any of this information if you talk to a college counselor. Most are not experts on benefits like SSI and Medicaid. When you, or your child, has a disability it becomes imperative to ask the right questions. If you’re like I was, you don’t know what you don’t know. So how can you ask the “right questions”?


You can start on Google (or the search engine of your choice). Write out the question in as much detail as you can. For example, “will I lose my SSI benefits if I go to college out of state?” Questions like these will often lead you to articles and/or blogs. Follow the thread to the author and see if there is any contact information for them. If there is, reach out. It’s not uncommon for me to get 2 or 3 emails a week from people who have follow-up questions about a YouTube video they watched.


I’m betting most people would be happy to answer your question and “show their work”. If they’ve gone to the trouble of writing an article or blog then they probably researched the topic pretty extensively (or maybe I’m just projecting what I do on everyone else).


I wouldn’t expect, or demand, a “free” consult, consider paying them for their time and knowledge. I switched to charging $49 for the first 30-minute call because I found I could often answer my client’s questions during this call and it didn’t make sense to me to set up an hourly consult. There’s an opportunity cost to consider. Time spent on a call with one person is time you don’t have to spend researching or creating new content to help the many. 


The sources they give you are what you will reference if/when something comes up. I’ve had quite a few clients around the country get their benefits back after they made their case using the state’s instructions with the local agency. The important thing to remember is these workers are human and deserve to be treated with civility. Many aren’t trained on all the regulations they are expected to enforce. Being polite and trying to work collaboratively with them will get you much further than letting the anger and frustration you may be feeling get the best of you.

If all of this seems too overwhelming or you want to talk it through, reach out – the first 15-minute call is free and I will refer to another expert if I’m not the best fit. The worst thing you can do is nothing, especially if you have a child who is getting ready to leave High School and start adult services. Contrary to how it can feel sometimes, most of us are not out to “get you”. We want to help. Let us be your lifeline.


All Kids Deserve Inclusive Classrooms

By Meredith Bartley / 2022-08-18
Posted in

In an interview with MSNBC, a representative for the group Moms for Liberty appeared to imply that LGBTQ+ children should be educated in separate