We were previously talking about what a disability benefits planner is – the post is linked here, but to recap:
A disability benefits planner is a trained professional who helps you navigate aspects of your disability benefits: employment and SSI or SSDI, marriage with your disability benefits, ABLE, special needs trusts, medicaid/medicare and more
A good disability benefits planner is worth their weight in gold, and you know what else? They are really hard to find. Sometimes I feel like they are elusive leprechauns, hiding behind rainbows that only exit the sky behind particular Social Security back alleys.
I’m probably making it harder than it needs to be. I know there are clear ways to find disability benefits planners, and this is what I know about how to find a disability benefits planner.
In This Post You Will Find:
How to Find a Disability Benefits Planner
I think finding one of these elusive creatures boils down to:
- Center for Independent Living
- Protection & Advocacy
- Word of Mouth: The Disability Network
Let’s cover these in a little more detail.
Work Incentives Planning and Advocacy (“WIPA”)
Work Incentives Planning and Advocacy, better known as “WIPA” hails from the Social Security Administration. WIPA programs are paid for by Social security, and the point of WIPA programs are to (in the words of SSA):
The goal of the Work Incentives Planning and Assistance (WIPA) program is to enable beneficiaries with disabilities to receive accurate information, and use that information to make a successful transition to work.
Each WIPA project has Community Work Incentives Coordinators (CWIC) who will:
- provide in-depth counseling about benefits and the effect of work on those benefits;
- conduct outreach efforts to beneficiaries of SSI and SSDI (and their families) who are potentially eligible to participate in federal or state Work Incentives programs; and
- work in cooperation with federal, state and private agencies and nonprofit organizations that serve SSI and SSDI beneficiaries with disabilities.
I copy/pasted that directly from the Social Security website (linked here: https://www.ssa.gov/work/WIPA.html). It sounds great, doesn’t it?! YES! It does! I want a WIPA Coordinator on my side!
Remember that they are employment-focused, so if you want a benefits planner to help you figure out how marriage and your benefits will work, or the interaction of your Medicaid and SSI, then WIPA coordinators won’t be very helpful. Also remember to do your research on them. They are human and can still make mistakes; try not to have their mistakes be on your back.
Side note: WIPA Coordinators receive their training through Virginia Commonwealth University. The program is linked here.
Center for Independent Living
These are hubs of disability community, connection, and resources. You can find which is closest to you by googling Your City Name + Independent Living Center. You should also try the National Council for Independent Living (NCIL) database, which is linked here.
My local CIL is heart-stoppingly awful (and yes, they are SO BAD that I am willing to be public about this), even if I literally live on an island and I will likely run into people from there at the grocery store). Other CIL’s are amazing, like truly living up to the mission of what a CIL is supposed to be and do.
Check out your local CIL to see what line they follow, and what resources they have by way of disability benefits planners.
Protection & Advocacy (P&A)
Every state has a P&A – a Protection and Advocacy – office. P&A has a program called Protection and Advocacy for Beneficiaries of Social Security (PABSS). This program can, among other things, help with:
- Disability benefit planning as it relates to returning to work/engaging in work
- Figuring out reasonable accommodations
- Disability discrimination and advocacy
- Career development, referrals to Vocational Rehabilitation, and/or other agencies
Word of Mouth: The Disability Network
This is likely to take you far, as your disability networks are fantastic sources of information on disability benefits planners, including who is good and who is… not.
I have a long post linked here on disability related Facebook groups; there are a lot of disability movers and shakers on Twitter, Instagram and TikTok as well. Reach out, search, connect. You want to be connecting with the greater disability community anyway; if you haven’t done it already, this is a great excuse to start.
Once you find your disability benefits planner, make sure to do your research on them, and ask:
What is their reputation like in local disability networks?
Have you seen them on LinkedIn? Poke around online to see their connections
Did you meet and do an initial interview with them?
Find out where their certification is from (or if they have certification: no judgment if they don’t, because some amazing planners do not have certification and some awful ones do)
How long they have been been working as a Disability Benefits Planner?
How many clients they have successfully helped, in what degree (what complexity)?
Do they have testimonials? (take this with a grain of salt though, unless/until the word-of-mouth testimonials stack up so high you can’t see the other side)
This entire process can be tedious, time-consuming and tiresome, but it IS WORTH IT!!
Don’t give up!
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Meriah Nichols is a career counselor. Solo mom to 3 (one with Down syndrome, one gifted 2E). Deaf, with C-PTSD and TBI, she’s also a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.