Stroke Recovery Access: How to Navigate Insurance, Costs, and Care

The potential for robust recovery after stroke is real. Yet, too often, survivors are blocked by a frustrating and under-resourced system.

The barriers are clear: insurance that doesn’t cover what’s needed, not enough providers, prohibitive costs, and services that are too far away. These are not just bureaucratic issues, they’re life-altering obstacles. But there are also workarounds, advocacy tools, and lesser-known resources that can make a real difference. Here’s a breakdown of the four most common challenges and what you can do right now to push forward.

Disclaimer: The information provided in this article is for general informational purposes only and does not constitute medical, legal, insurance, or financial advice. RebuildAfterStroke.org is not a healthcare provider or legal advisor. You should consult with a licensed medical professional, attorney, or insurance specialist before making decisions related to your health care, coverage, or legal rights. While we strive to provide accurate and up-to-date information, policies and program availability may vary by state and are subject to change. Always verify details with official sources or qualified professionals.

1. The Wrong Insurance

The challenge: Your current plan doesn’t cover enough rehab, won’t authorize more visits, or excludes stroke-specific care altogether.

What you can do:

i.) Use Medicare’s "Jimmo v. Sebelius" ruling to your advantage. Medicare cannot deny coverage just because you’re not “improving.” If maintenance therapy helps you preserve function, it’s still covered. Mention this legal precedent when appealing denials. CMS Jimmo Settlement Fact Sheet

 ii.) Contact your state’s SHIP (State Health Insurance Assistance Program) for free 1-on-1 guidance from trained advisors on switching or maximizing your plan. Find your SHIP: www.shiphelp.org

iii.) Request a peer-to-peer review. If your therapy is denied, ask your provider to initiate a peer-to-peer review with the insurer’s medical director. This often gets better results than a paper appeal alone. Why it helps: Instead of a nameless checklist review, your doctor speaks directly with a physician of similar specialty to explain the clinical rationale, e.g., why you still need task-specific gait training or intensive aphasia therapy. These calls often overturn denials on the spot or within 24 hours.

How to set it up:

1. Call the number on your Explanation of Benefits and request “peer-to- peer review” for the denial.

2. Give the case reference number to your provider’s billing office; they must initiate the call.

3. Make sure your therapist supplies progress notes, recent outcome measures (Fugl-Meyer scores, ASHA FACS, etc.), and a statement of medical necessity so the physician reviewer has concrete data.

4. Follow up the next day to confirm the decision is updated in the insurer’s portal and obtain the authorization number in writing. If the denial stands, you can still file a formal written appeal, but P2P often succeeds without that extra paperwork.

iv.) Consider Switching to Traditional Medicare + Medigap during open enrollment (Oct 15–Dec 7). Many stroke survivors find that Traditional Medicare combined with a Medigap (or “Medicare Supplement”) plan gives them better access to rehab services than Medicare Advantage (MA) plans. Here’s why and how to make the switch:

What’s the difference?

Medicare Advantage (MA) is a private plan that replaces your Medicare and often has networks, prior authorizations, and limits on therapy visits. Traditional Medicare is run by the government, has no provider networks, and pays for 80% of covered outpatient services like PT, OT, and speech therapy. A Medigap plan helps pay the remaining 20%, so you’re not left with large out-of-pocket costs.

Why switch?

If your Medicare Advantage plan is limiting your rehab like cutting off therapy too early or requiring long wait times for approval you may have better access and fewer restrictions with Traditional Medicare + Medigap.

When to switch:

You can make the change during Medicare’s Open Enrollment period, which runs from October 15 to December 7 each year. If you enroll then, the new coverage will begin January 1 of the following year.

What you’ll need to do:

1.     Leave your Medicare Advantage plan and return to Traditional Medicare (Parts A and B).

2.     Enroll in a Part D drug plan (since Medigap does not include prescription coverage).

3.     Apply for a Medigap plan to help cover the 20% coinsurance that Medicare doesn’t pay.

Important note about Medigap: Unlike Medicare itself, Medigap plans can ask health questions and deny you based on pre-existing conditions unless you qualify for a special guaranteed issue right (for example, if you’re switching within the first year of trying a Medicare Advantage plan).

Some states have special protections or “trial periods” that let you join a Medigap plan without underwriting check with your local State Health Insurance Assistance Program (SHIP) to find out what applies in your case.

Where to get help: Contact your local SHIP office for free, unbiased advice  on your Medicare options. Find your state’s SHIP here: www.shiphelp.org

2. Poor Availability of Providers

The challenge: You have coverage, but you can’t find a stroke-competent PT, OT, or speech therapist who’s accepting new patients, or any nearby at all.

What you can do:

i.) Search the provider directories of the American Speech-Language-Hearing Association (ASHA), the American Occupational Therapy Association (AOTA), and the American Physical Therapy Association (APTA), and filter by stroke or neurological specialty:

• Physical Therapists: apta.org (American Physical Therapy Association)

• Occupational Therapists: aota.org (American Occupational Therapy Association)

• Speech-Language Pathologists: asha.org/profind (American Speech-Language-Hearing Association)

ii.) Ask for telerehab referrals from national stroke centers such as:

• Shepherd Center Beyond Therapy (Atlanta-based but virtual options available): shepherd.org

• The Center for Neuro Skills: neuroskills.com

iii.) Check if a local university offers student-run clinics.

These often provide free or low-cost therapy under faculty supervision. Contact schools with PT/OT/SLP programs in your state directly.

iv.) Join an online support group and ask others in your region for recommendations. Facebook groups like Young Stroke Survivors, Aphasia Recovery Connection, and Stroke Survivor Support Group often crowdsource provider leads in your area.

3. It’s Too Expensive

The challenge: Even when stroke rehabilitation is technically covered by insurance, the true cost of recovery adds up quickly, and can become overwhelming. Many stroke survivors and caregivers are blindsided by expenses like:

• High copays or coinsurance for physical, occupational, or speech therapy

• Out-of-pocket costs for prescription medications, including blood thinners, statins, and antidepressants

• Transportation costs for getting to therapy or follow-up neurology appointments

• The need for assistive devices (canes, braces, communication boards)

• Home modifications (grab bars, ramps, bathroom conversions)

• Lost income from being unable to work

  
  

These costs can easily reach thousands of dollars a year, especially for survivors with limited income or high-deductible insurance plans. But there are programs that can help if you know where to look.

What you can do:

i.) Apply for your state’s Medicaid Brain Injury or Long-Term Care Waiver

Many states offer Home and Community-Based Services (HCBS) Waivers for people who have survived a stroke or other acquired brain injury (ABI). These waivers can provide:

• In-home physical, occupational, or speech therapy

• Help from personal care aides for dressing, bathing, and meal prep

• Transportation to medical appointments

• Respite care for caregivers

  
  

These waivers are often available even if you don’t qualify for traditional Medicaid but they usually have long waitlists, so apply early.

How to start: Search online for: “[Your State] Medicaid brain injury waiver” For example: Arizona Medicaid ABI waiver or California TBI waiver program. You can also call your state’s Medicaid office or Area Agency on Aging for help applying.

ii.) Contact your state’s Assistive Technology (AT) Program

Every state has an Assistive Technology program funded through the federal AT Act that offers:

• Free short-term loans of devices like walkers, shower chairs, and voice-output communication aids (for aphasia)

• Financial assistance or low-interest loans to help purchase equipment

• Reuse or exchange programs that offer gently used mobility and therapy tools

  
  

These programs are especially helpful for stroke survivors who need durable medical equipment but are underinsured or ineligible through Medicare.

Find your program: Visit the national AT3 Center directory: https://www.at3center.net/stateprogram

iii.) Search the NeedyMeds database for stroke-related financial aid

NeedyMeds.org is a nonprofit clearinghouse that lists financial assistance programs for:

• Specific medications (e.g., Eliquis, Plavix, atorvastatin, antidepressants)

• Medical supplies and equipment

• Nonprofit foundations that help with stroke-related expenses, including transportation, copays, and rehab

  
  

How to use it:

1. Visit www.needymeds.org

2. Click “Patient Savings” → “Diagnosis-Based Assistance”

3. Search for "stroke," "aphasia," "paralysis," or specific medication names

4. Use the “Transportation” and “Medical Equipment” categories for additional support

   
   

iv.) Ask about hospital-based financial assistance programs

Most nonprofit hospitals and large health systems have financial aid departments that can:

• Reduce or forgive therapy copays

• Enroll you in charity care

• Assist with applications for disability benefits (SSDI/SSI) or drug discount programs

  
  

Ask the billing office, social worker, or case manager at your hospital for information. You’ll typically need to complete a brief application and provide proof of income.

4. It’s Too Far Away

The challenge: For many stroke survivors—especially those living in rural areas, small towns, or tribal lands—the closest stroke rehab center, neurologist, or speech-language pathologist may be 50 to 100 miles away. For someone who is newly disabled, dealing with fatigue, or unable to drive, this can make access to essential therapy nearly impossible. Even for those with a caregiver, the cost and burden of travel can become overwhelming.

Fortunately, there are several home-based, telehealth, and community-supported options that can help bridge the gap.

What you can do:

i.) Ask your doctor to refer you for Medicare-covered Home Health Therapy.

If you are considered "homebound" meaning it’s difficult or unsafe for you to leave your home without assistance Medicare will likely cover in-home physical, occupational, or speech therapy through licensed home health agencies.

These therapists come to your house and can work with you on:

• Gait training and balance

• Strengthening and mobility

• Speech and language recovery

• Activities of daily living (like dressing, grooming, cooking)

  
  

You’ll need a physician’s referral and a care plan, which is typically coordinated after discharge from a hospital or inpatient rehab center. Services are available through national agencies like Amedisys, Enhabit, or regional providers.

How to check eligibility: Visit www.medicare.gov/coverage/home-health-services

ii.) Search the National Aging and Disability Transportation Center (NADTC) for local ride programs

Many counties and cities offer non-emergency medical transportation (NEMT) for eligible individuals—especially those with Medicaid or aging-related disabilities.

These programs may provide:

• Free or low-cost van rides to therapy, clinics, and medical appointments

• Volunteer driver programs coordinated by senior centers, religious organizations, or community health agencies

• Medicaid-funded rides through state-approved brokers

To find available services in your area, contact NADTC or your local Area Agency on Aging.

Learn more and search for options here: www.nadtc.org

iii.) Use telerehab platforms for therapy from home

If in-person therapy is too far away, many stroke survivors can benefit from telehealth rehabilitation, either through formal therapy sessions or self-guided home programs.

Therapist-designed digital tools like:

• Constant Therapy: An app that helps retrain speech, memory, attention, and problem-solving after stroke. Can be used independently or with a remote SLP.

• Tactus Therapy: Offers app-based programs for aphasia, dysarthria, apraxia, and cognitive communication issues.

  
  

These platforms are based on evidence-based rehabilitation principles and can support recovery when in-person therapy isn’t available or be used to extend progress between sessions.

Note: Some clinicians may also offer real-time telehealth visits using Zoom or a secure health platform. Ask if your rehab provider offers virtual sessions.

iv.) Request travel assistance from local organizations

Many stroke survivors don’t realize that travel support programs exist—but they’re often only accessible if you ask.

Examples of where to look:

• Local stroke nonprofits or brain injury alliances (e.g., Brain Injury Alliance of Arizona)

• Rotary Clubs or Lions Clubs may sponsor transportation, hotel stays, or gas cards for medical travel

• Hospital foundations or rehab centers may have discretionary funds or partner with rideshare services

• Church groups, tribal health offices, or United Way chapters may offer volunteer transport programs

  
  

When asking, explain:

• You are a stroke survivor

• You need transportation for therapy or follow-up care

• You are unable to access services without assistance

You’re Not Alone

Navigating recovery after stroke shouldn’t require a second full-time job, but for many, it does. If you’re feeling stuck, overwhelmed, or unsure what to try next, we’re here to help. We are building a national directory of resources, provider referrals, and stroke support groups. We also work directly with survivors and caregivers to troubleshoot access issues, connect them to funding programs, and advocate for better policies.

If you need help, reach out. If you have a resource to share, send it to us. Together, we can make recovery possible for everyone.