Secret Secrets Are No Fun - 6 Resources Every Disabled Person Should Know About

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Summary:

There are so many different organizations and resources that exist that can help make the lives of disabled folx easier. But it can be so hard to find them online, especially when you want to make sure the organization is legit and actually supportive of the disability community. This article shares my top six resources that every disabled person should know about and can use as a starting point for assistance.

 

When I became disabled in high school, I was still going to a pediatrics hospital for my specialists. An unexpected benefit of this occurred when I aged out. I was informed that I had to meet with a social worker.

I was confused. In my experience so far in life, social workers only got involved if something was wrong. But this appointment ended up being one of the most helpful medical appointments I had ever had.

My mom and I sat in this small room with a social worker and a doctor from the transition department. Together, we went through a large stack of papers, including a list of resources that could be helpful to me.

Now, hang on a moment. What resources? And why was I only hearing about these now?

After that day, I collected even more resources to add to that list whenever a problem arose. And I was stunned at how much information there was — IF you knew where to look. So here are my top six resources for disabled folx.

*Note - I am not a lawyer, social worker, financial consultant, or other expert beyond what I’ve learned from my own experience.

1. Your State’s Disability Rights Group and the National Disability Rights Network (NDRN)

The National Disability Rights Network (NDRN) is the nonprofit membership organization for federally mandated groups that are part of the Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP). So what does that alphabet soup all mean?

These organizations can be your first (and sometimes, final) stop. They can provide legal representation and consultation for accommodations, discrimination, etc. Typically, their websites also have information on other local groups and resources, such as SSI/SSDI, Medicaid, workplace accommodations, housing, etc. I have personally contacted my state organization multiple times, and every time, they have been very patient and helpful.

Each state and territory has at least one organization in the NDRN. There is also one for Indigenous Peoples in the four corners region. You can find yours online at ndrn.org/about/ndrn-member-agencies/

2. JAN - The Job Accommodation Network

This is a great resource for both disabled and non-disabled folx. And it can be helpful for any situation, not just work, whether you’re making your home life more comfortable or hosting an accessible event.

One of its best features is their list of accommodation ideas. When I first became disabled, I thought that my only pain management options were heat therapy and over-the-counter pain meds. I had no idea to even look for other options until much later, and that can take a lot of time and energy.

But JAN does this work for you! It has numerous suggestions with details on how to implement the accommodation. For instance, if you look under chronic pain, they have information on all sorts of aids, such as a single-handed keyboard. I didn’t even know those existed. It’s definitely worth a look, and I never fail to be amazed at the creativity of the tech and solutions.

3. Medicaid

Each state has its own specific Medicaid programs and guidelines, and it can be a little difficult to figure out all of the details. You can find information for your state on the Medicaid website at: medicaid.gov/about-us/beneficiary-resources/index.html#statemenu

If you have any problems with healthcare coverage, contact your local disability rights group (see #1)! For instance, when I had problems with my Medicaid, Disability Rights PA put me in contact with a local group called the PA Health Law Project (PHLP). They gave me a caseworker who magically fixed the problem on my behalf — for free. I didn’t have to spend hours on the phone, waiting on hold, stressing out, and exhausting myself.

A common misconception is that if you are working, even part-time, then you aren’t eligible for Medicaid. Again, this may vary by state, but many states have a specific Medicaid category for workers with disabilities, which can be a great option if you’re working part-time and aren’t offered any benefits.

If you have health insurance already, did you know that you can have Medicaid as a secondary insurance? Think of it like splitting the bill at a restaurant. Your primary insurance is responsible for a portion of the bill, and you pay the rest (aka co-pays). Having a secondary insurance means that the remainder goes to Medicaid first and then goes to you, so you could pay even less, if anything at all! Check with your state Medicaid program for more information.

4. ABLE Accounts

ABLE accounts are special saving accounts for disabled folx. And yes, this would mean having yet another financial item to keep track of. So, why bother?

The benefit is that savings in an ABLE account will not (for the most part) affect eligibility for SSI, Medicaid, or other programs that take into account income, savings, and assets. This allows disabled folx to save money and remain eligible for important programs.

The ABLE Act limits eligibility to people under the age of 26 OR people whose disability onset was before they turned 26. (Note: there is proposed legislation to extend this to onset before age 46, but this has not been enacted yet).

If you receive SSI or SSDI and meet the age of disability onset requirements, you are automatically eligible. Otherwise, you can still be eligible if you can provide a letter from a doctor that verifies your disability and that you meet Social Security’s criteria for disability.

ABLE accounts are state-specific. However, if one is not available in your state, you can sign up for a program in another state that accepts outside residents. The ABLE National Resource Center provides a tool to compare programs at ablenrc.org/select-a-state-program/

5. ADA

If you identify as disabled, odds are that you know about the ADA - the Americans with Disabilities Act. It provides for many of the disability rights and accessibility that we have today. But you may not know that there is an ADA helpline. If you have any questions about the law or would like to make a complaint, you can contact them directly at 800-514-0301 or 1-833-610-1264 (TTY).

The actual ADA law is also available online at ada.gov along with fact sheets and resource materials, such as an FAQ about Service Animals or how the ADA applies to telehealth.

6. Vocational Rehabilitation Services

Another organization that can help is your state’s vocational rehabilitation department. The name varies state to state, but it is typically something like Pennsylvania’s Office of Vocational Rehabilitation (OVR). They have services and programs to help you transition from school to work, find and apply to jobs, and receive job training, among others. It’s a great starting place if you’re looking to go back to work or just want some job support.

Be sure to share these and any other resources that you know about with others in the community! Resources and services that can help us should not be a secret. The last thing we need is to waste time and energy on things that could be so much easier for us if we only knew where to look for help.