This website is an independent directory of third-party resources. Information here is for educational purposes and does not constitute medical, legal, or financial advice.
MS Grants, Gear & Access Hub
Rooted in lived experience with Multiple Sclerosis, this platform provides curated resources, financial navigation tools, and practical guidance adaptable for individuals and caregivers living with various chronic health conditions.
About the Founder & Mission
Lived ExperienceCreated by Kreg & Charlene Starzonek. Built directly from our lived experience navigating Multiple Sclerosis, this independent directory brings together practical grants, assistance programs, and peer tools to support patients and caregivers living with chronic conditions.
Disclaimer: This site is provided for informational purposes only. We are not responsible for the accuracy, completeness, or reliability of any information listed here. Always verify program details directly with the sponsoring organization before applying or making financial decisions.
Let's Find What You Need
Tell us about your situation to quickly filter down to the most relevant programs, grants, and support groups.
Select condition(s)
Select all conditions that apply (multiple selections welcome).
What kind of help do you need right now?
Select one or more categories below (multiple selections welcome).
Looking for advice from people who get it?
Skip the generic advice and connect directly with patients and caregivers who have navigated these systems. Anyone is welcomethis support community is public and geared toward any chronic illness.
Join Our Facebook CommunityResource Directory
A growing directory of independent support programs. In our directory, "verified" means web links have been checked and official contact details confirmed.
All Resources
Tip: Check the boxes on the cards below to print your own custom list.
Communication Toolkit
Professional scripts and strategies to advocate for yourself.
💡 Strategic Tips for Success
Prepare Your "Grant File"
- • Digitize last year's tax return (Form 1040) and last 2 pay stubs.
- • Keep a PDF of your most recent doctor's clinical notes confirming diagnosis.
- • Know your exact household size and current gross income.
Organizing Your Asset Protection File
If you are setting up an ABLE account or working with an attorney on a Special Needs Trust, keep these documents digitized in your grant/financial file:
- SSDI/SSI Award Letter: This serves as automatic proof of disability eligibility for opening an ABLE account.
- Physician Self-Certification Letter: If you do not receive SSI/SSDI but your disability started before age 46, keep a signed PDF from your doctor stating that you have "marked and severe functional limitations."
- Authorized Legal Representative (ALR) Documentation: If you are managing an account on behalf of a family member, keep your Power of Attorney (POA) or legal guardianship papers ready.
Communication Rules
- • Be Concise: Grant managers read hundreds of emails. Stick to facts.
- • Ask Don't Assume: If you don't perfectly fit criteria, ask if exceptions are made.
Timing & Follow-Up
- • Apply early in the calendar year when fund pools are typically replenished.
- • Wait exactly 10-14 business days before following up on an application.
What Grant Committees Evaluate
Understanding how organizations weigh your application helps you tailor your communication.
- ✔ Medical Necessity: Linked directly to symptoms.
- ✔ Financial Hardship: Falls below FPL threshold.
- ✔ Documentation: Paperwork correctly provided on the first try.
📋 Copy/Paste Templates
Generate a script, then fill in the bracketed info [like this] before sending.
Know What Procedures Cost
Medical bills are one of the biggest shocks in chronic illness. These tools let you look up what procedures actually cost in your area - before you commit to anything.
What to Look Up
- Before you schedule: Get estimated cost ranges
- For the same procedure: Compare hospital vs surgical center (often cheaper)
If the Price Seems High
- Call the financial counselor. They handle negotiation daily.
- Shop around. Price varies by facility - get 2-3 quotes.
💡 Pro Tips for Beating Healthcare Costs
Get the exact CPT Codes
Always ask your doctor's billing scheduler for the exact 5-digit CPT procedure codes (e.g., CPT 70551 for a Brain MRI; note that procedure codes are illustrative examples and must be confirmed with your medical provider's billing office) before calling your insurance. Representatives can only quote coverage and out-of-pocket costs accurately with this specific code.
Ask for 'Self-Pay' Rates
For imaging like MRIs and CT scans, ask the provider for their "uninsured self-pay cash discount rate." Sometimes paying out-of-pocket is direct and significantly cheaper than your high-deductible insurance co-pay rate or co-insurance requirements. Note: Electing an uninsured self-pay cash discount rate usually prevents that expenditure from counting toward your health insurance annual deductible or out-of-pocket maximum.
Watch for Accumulators
If you use a pharmaceutical co-pay card or assistance program, ask if your insurance plan has a "co-pay accumulator adjustment." If it does, manufacturer assistance does not count toward your personal maximum out-of-pocket deductible.
Pro Tip: ABLE Qualified Housing Expenses
ABLE account distributions can be utilized to pay for qualified housing expenses, such as rent, mortgage, or utilities. Note that effective September 2024, the SSA no longer counts unearned food or grocery assistance as In-Kind Support and Maintenance (ISM).
Housing withdrawals from an ABLE account should be spent within the same calendar month in which they are withdrawn to avoid being evaluated as an asset resource for SSI eligibility in subsequent months.
Live Look-up Tools
Finding Help Near You
State help is a maze of acronyms and busy signals. We are not a government office. We cannot write the check. But we can point you to the people who do. This section connects you to your state's work help office and the home care waivers. Select your state to get the roadmap to their front door.
3 Critical Steps to Get Help
THE STRATEGIC BLUEPRINT FOR CONQUERING THE STATE MAZE
Explore Medicaid Waivers
State Home and Community-Based Services (HCBS) waivers utilize institutional income thresholds (often up to 300% of the SSI benefit rate) to assist individuals needing long-term services. Depending on state rules, waiver types, and formal relationship boundaries, programs may support professional care or allow self-directed care funding for family caregivers.
Enrollment caps and waiting list durations vary significantly by state, county, and program, sometimes stretching over months or years. Applying early helps establish your timeline for evaluation.
Deploy Vocational Rehabilitation
State "Voc Rehab" agencies exist to support individuals with disabilities in preparing for, securing, or maintaining employment. If you are building a career or working remotely, VR programs can assist with workplace evaluation and modifications.
Work directly with your vocational rehabilitation counselor to ask clear, assertive questions about evaluation for assistive technology, workplace adaptations, custom ergonomic equipment, and job skills training.
Shield Assets with State ABLE Plans
An ABLE Account (529A) provides a statutory resource exclusion, permitting eligible individuals to save up to $100,000 without counting toward the SSI resource limit (note that other benefit programs may apply separate resource rules).
Thanks to the ABLE Age Adjustment Act, as of January 1, 2026, you are eligible to open an account if your disability onset occurred before age 46 (previously age 26).
You can open an account in almost any state's plan. Use the resource directory below to see if your home state offers a state tax deduction or protects your estate from Medicaid Clawback.
Your Selection
Verified local programs and support links.
Help at Work
Connect with your state's Vocational Rehab office to pay for work modifications or job retraining.
Medicaid Waivers (HCBS)
The "Home and Community Based Services" Waiver provides long-term support services using institutional financial thresholds and functional level-of-care criteria.
Find My State's Waiver
ABLE Accounts vs. Special Needs Trusts
A comprehensive, styled guide for chronic illness families to shield up to $100,000+ and protect their means-tested benefits.
If you are living with a chronic illness like Multiple Sclerosis, keeping your finances afloat is hard enough without the government threatening to cut off your healthcare. For years, millions of Americans on SSI or Medicaid have been trapped by the restrictive $2,000 asset limit.
Thankfully, two powerful financial shields exist to help you save money, accept inheritances, and work without losing your safety net: ABLE Accounts (529A) and Special Needs Trusts (SNTs).
STRATEGIC COMPARISON: HOW ABLE ACCOUNTS AND SPECIAL NEEDS TRUSTS INTERACT TO PROTECT YOUR INDEPENDENCE.
1. The Quick Breakdown: ABLE vs. SNT
Most people assume a traditional "trust fund" is the only way to protect assets. However, a Standard Revocable Living Trust does not provide resource protectionthe SSA views those assets as fully available to you, which can trigger a benefits interruption. To protect eligibility, structured legal mechanisms like an ABLE Account (529A) or a Special Needs Trust (SNT) are used.
| Feature | ABLE Account (529A) | Special Needs Trust (SNT) |
|---|---|---|
| Setup Cost | Nominal (Direct online enrollment) | $2,000$5,000+ (Requires legal drafting by estate attorney) |
| Control & Management | Beneficiary / Authorized Rep via debit card or portal | Designated Trustee (Disbursements made at trustee discretion) |
| Housing Expenses | Qualified Expense. Must spend in same calendar month. | Subject to trustee discretion and unearned income rules. |
| Contribution Limits | Statutory Cap ($20,000/yr annual deposit limit in 2026) | Unlimited |
| Max Asset Limit | Up to $100,000 (SSI resource exclusion limit; Medicaid retained) | Unlimited |
| Tax Status | Tax-free earnings & distributions for QDEs | Taxed based on trust structure and distribution rules |
| Medicaid Payback | Subject to state claim rules upon beneficiary death | 3rd-Party SNT: No Medicaid payback required. 1st-Party SNT: Mandatory Medicaid payback required. |
2. ABLE Accounts: Financial Management Tools
An ABLE account serves as a tax-advantaged savings vehicle. Owned by the beneficiary or managed by an authorized representative, it allows direct payment for healthcare copays, transportation, and adaptive gear.
Who is Eligible?
As of January 1, 2026, the ABLE Age Adjustment Act expanded eligibility. Individuals whose disability onset occurred before age 46 are eligible to establish an account, regardless of current age.
Key Features:
Tax-Free Growth
Account earnings grow tax-free, and distributions are tax-free when utilized for Qualified Disability Expenses (QDEs) including housing, mobility, healthcare, education, and assistive services.
ABLE-to-Work Provision
Working beneficiaries who do not contribute to an employer retirement plan may contribute additional earned income up to the single-person Federal Poverty Level ($15,060 for continental U.S. in 2026; $18,810 for AK; $17,330 for HI), limited strictly by their actual compensation if less.
529 College Rollovers
Rollover provisions may permit transferring funds from a 529 college account to an ABLE account tax-free up to annual contribution caps. Users must verify current tax rules, eligibility, and annual limits with a advisor prior to initiating a rollover.
3. Special Needs Trusts: Long-Term Financial Planning
A Special Needs Trust (SNT) is a legal arrangement where a designated Trustee holds and manages assets for a beneficiary with special needs.
Trust Types & Capacity:
First-Party SNTs
Funded with the beneficiary's own assets (e.g., personal injury settlements or direct inheritances). Federal law mandates a Medicaid payback provision requiring remaining funds upon the beneficiary's death to reimburse the state for Medicaid benefits received.
Third-Party SNTs
Established and funded using assets belonging to parents, family members, or third parties. Third-party SNTs do not require Medicaid payback, allowing remaining trust assets to pass to designated family heirs or charities upon the beneficiary's death.
4. Integrated Planning: Coordinating ABLE & SNT Structures
Families frequently coordinate both ABLE accounts and Special Needs Trusts to align long-term asset management with daily liquidity:
Estate & Gift Structuring
Direct third-party inheritances or gifts into a Third-Party Special Needs Trust to preserve estate assets without triggering Medicaid payback rules.
Trustee Disbursements
At trustee discretion, transfer funds up to annual deposit limits from the SNT directly into the beneficiary's ABLE Account.
Autonomy & Expense Management
Utilize ABLE funds for qualified disability expenses without requiring individual trustee approval for every transaction. Ensure housing withdrawals are spent within the same calendar month.
You Are Not Alone
We have MS. Not just one of us, we. This is a shared journey, and navigating the system of grants, healthcare, and daily living is too hard to do in isolation.
This directory grew out of years of personal research, our original caregiver respite resource guide, and information shared by the MS community, including Jan from MS with Moxie. We organized these practical programs, grants, and caregiver tools into something easier to navigate. Many programs are difficult to find unless someone points you in the right direction. This hub helps shorten that search. Follow our social channels and read our blog where we document our life with dry humor and radically honest adjustments. Whether you are newly diagnosed, a caregiver, or years into the journey, you are welcome here.
Our Facebook Page
Join us (Kreg & Charlene) on our official social page "Our Voyage with MS" as we document the voyage, share dry humor, engineering fixes, and life adjustments. Give us a follow and say hello!
Join Our Facebook Community for Resources
Our Facebook community is public and everyone is welcome to join. It is designed as an open space to swap notes, discuss adaptive gear, share grant opportunities, and find supportgeared toward anyone navigating life with any chronic illness.
Our Voyage with MS Blog
Moin Moin! Read our radically honest thoughts about the MS voyage.
Full-time RV travelers navigating life, the open road, and Multiple Sclerosis together.
We have MS. Not just Charlene. We.
Life doesn't end with MS. It simply takes a different road.
Let's see the world, one charge cycle at a time.
MS with Moxie
Our friend Jan provides peer support, advocacy, and persistent moxie for individuals fighting MS. Great community-driven space with a wealth of experience.