Advice for Those with Disabilities on the Days Ahead
How to prepare with knowledge, organization, social support and legal support
In a prior article, I was encouraging those who think they cannot leave the US to reconsider. But many know it is not possible. This is unfortunate not only because people may have limited options, but also because there is huge psychological benefit to planning such a move (even if you never execute it). These are stressful, uncertain times and planning can give you back autonomy and a sense of control (both vital for coping and resilience). So if you can’t leave, and you have disabilities, what else can you do to get the benefit of preparation and sense of control?
This article is focused on things that those with disabilities can do now to weather turbulent times ahead. My last article was focused on what seniors can do. As you’ll notice, there is quite a bit of overlap between these articles so I encourage anyone who finds one article useful to have a look at the others. Let me also preface this article by stating that I am neither disabled nor have any background that suggests I have expertise in this domain. However, what I am good at is finding resources and summarizing them from experts. For this article, I have turned to disabilities advocates to get the information you need. I hope it’s helpful in some way.
How to Prepare for Times Ahead if You Have a Disability
As political threats to disability rights and resources grow, preparation is key. The problem is the ever changing landscape and separating opinion, predictions and actual facts.
Knowledge is Power: Know your Rights and What Might Change
Some examples of programs that may be impacted in the future include Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), Medicaid, SNAP (food assistance), Section 8 Housing and ADA protections. While it remains unknown what the scope of the impact could be on you, it remains valuable to contemplate and plan for any changes that could occur.
Bookmark Advocacy Organizations
These are some of the organizations fighting on your behalf. They are the best source to get information on what is happening now and what to expect into the future:
Collect Information and Resources
The main Federal Disabilities Services website for information on and updating benefits, services and protections:
Find local resources of support in your area, including information about essential services such as transportation, housing support, disability rights and more at Disability Information and Access Locator (or call text or videophone (ASL users) at 888-677-1199.
Bolster Your Mental & Emotional Health
The constant uncertainty and stress can take its toll on everyone, but especially if your well-being is so dependent on the current administration.
Build Social Support. We know the social support and social engagement during such difficult times is so critical for how well we can cope. Not only for mental health but also possibly practical support (such as information sharing). We can all work on creating bigger social networks of like-minded people to buffer us. Here are some possibilities for you:
Create and or grow your local circle of support- friends, allies, caregivers, allies who can help if services are disrupted. Get to know your neighbours, participants in community functions, and those in a faith based community that you might join.
Check out My Disability Matters, an inclusive online discussion/social networking community for people with disabilities and their allies.
Look into The Mighty which is a large online community composed of articles and connections to others, focused on disability, chronic illness, mental health, and rare conditions.
Don’t forget the subreddits for disability, chronic illness, and mental illness, which are moderated forums for people sharing your concerns.
Seek Emotional and Mental Health Support
7Cups offers free 24/7 emotional support.
EasterSeals has a page with a huge link of online peer support resources, and they also offer a free tool for self-diagnosis of different mental health conditions:
EasterSeals also offers mental health self-diagnostic tests and articles about different conditions such as anxiety or depression.
Creative outlets and affirming media (such as books, music, zines by disabled creators). Examples include
Crip Camp (documentary)
Alice Wong’s essays and podcast
Chronically Capable: a job board and resource for disabled job-seekers
Get Organized
Warning: This is LONG. Build a “readiness file” of the following copies in ideally digital and hard copy. If the government cuts your benefits, it’s going to be by a thousand cuts of bureaucracy. Grossly unfair I know, but the best thing you can do is fight them back with organization and details.
So here is a list. It looks long and overwhelming but keep in mind a) not all of it will apply to you, b) you may find it helpful to enlist the support of someone you trust to do it with you and c) you need not have this together tomorrow. Make goals for yourself and do a bit at a time. Maybe pick off the easiest ones first to find what remains.
Core Identity & Legal documents
Social security card
Birth certificate
Photo ID
Medicare/medicaid cards
Immigration/citizneship documents
Guardianship/conservatorship documents
Power of attorney, advanced directive, living will
Disability Documentation
Formal diagnosis from licensed medical provider (with ICD codes if possible)
Doctor’s narrative reports detailing impairments and how they limit function
Psychological evaluations (if mental health disability)
Functional capacity evaluations
Hospital records and discharge summaries
Treatment history (dates, provides, outcomes0
Medication list with doses and side effects
Letters from specialists
Letters from therapists and/or social workers
Social Security & SSI/SSDI
Copy of initial Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) application
Award letters
Denial letters and appeal documents, if any
Payment records
Work history used by SSA in determination
SSA-827 form (authorization to release information)
Name and contact info of SSA caseworker
Income & Financial Records
Recent bank statements (last 3-6 most)
Pay stubs 9 (if working part-time or under a program like Ticket to Work)
Statement from pensions, annuities, or other income sources
Proof of SNAP, Section 8 housing, or utility assistance
Tax returns (especially if earning income while on SSDI)
Housing and Living Arrangements
Lease/rental agreement or mortgage paperwork
Utility bills
Proof of subsidized housing or public housing participation
Health Insurance & Care
Medicare/medicaid enrollment letters
Private insurance cards & policies if any
Explanation of benefits from insurers
List of providers and contact information
Prior authorization for treatments
Billing dispute records
Employment & Vocational Records
Vocational rehabilitation plans
Work Incentives Planning & Assistance (WIPA) documentation
Ticket to Work documentation
Letters form former employers about acccomodations
Past job descriptions and dates of employement
Statements showing work attempt and reasons for leaving
Tracking and Logs
Symptom diaries or daily function logs
Appointment calendar or medical visit summaries
Communication logs with SSA or insurance providers
Copies of forms submitted to SSA or other benefit programs.
If Benefits are Cut or Denied
Learn the appeals process for SSI, SSDI, and Medicaid. Disability Benefits 101 offers detailed state-by-state help.
File an appeal immediately (deadlines can be as little as 10-60 days). Ask for continuation of benefits while the appeal is pending (especially with Medicaid or SSI).
Connect with Disability Rights organizations in your state: Google “Disability Rights [State Name]”
Scroll down to next section to see the list of free or low cost legal resources to assist you
Legal and Financial Resilience
For legal support:
Look into local Legal Aid (scroll down and on your left and enter your zip code)
Your state’s Protection & Advocacy office for your State: Directory here
Most State or County Bar Associations have referral services or pro bono programs. Google “[Your State] bar association legal aid”
Many law school clinics offer legal aid clinics. Google “[Law School Name} disability legal clinic” or “[Law School Name] health law clinic”
For Finances, if possible, set up:
ABLE Account — to save money without losing benefits
Special Needs Trust — to protect assets and remain eligible for aid
Bookmark this website of the National Disability Institute, a national non-profit committed to financial education and empowerment for those with disabilities
Plan for Service Interruptions
List all services you receive (in-home care, mobility devices, case managers, housing subsidies).
Research backup care options, such as:
Faith-based services
Look into State Medicaid waivers (for home and community based services);
Nonprofits like Easterseals
Crowdfunding options in case of emergencies (e.g. GoFundMe with social amplification)
Advocate & Vote
You have various organizations fighting for your rights. You can advocate by:
Contacting lawmakers: Who Represents Me?
Joining campaigns by:
Register to vote and assist others: nass.org/Can-I-Vote If mobility is an issue, request vote-by-mail or ask a community group for help.
Final Word
I will admit I was utterly overwhelmed by the complexity of this task. Not surprisingly, I will not claim to cover anything more than a subset of resources for you. I have so much empathy for those of you having to wade through the maze of support that you legally and morally deserve. But one thing is also very certain: You are so not alone. Not only are there approximately 19 million of you receiving SSDI, SSI and/or Medicaid, but there are very many advocating on your behalf. Where there are numbers, there is strength. It is unnerving waters ahead but hopefully with planning, preparation, and support, you will gain some peace and some sense of autonomy and control back. I hope this gets you started in that direction.
Thanks for reading!
Canada Resists
Thank you for this.
This is exhaustive, and you have gone way above and beyond the call
Again, thanks