Virginia Resource Guide for Huntington's Disease

Ask Your Guide

Ask anything about HD resources, benefits, care, or finding help in Virginia.

Hello! I know all 300+ resources in this guide. Ask me anything about HD care, benefits, clinics, or support in Virginia.

Caregiver support How to apply for SSDI HD clinics near me CCC Plus waiver Swallowing problems

Built by HD families in Virginia — not a hospital or government agency. We've been through the VA claims, the SSDI denials, and the long nights. This is what we wish we'd had. Questions? huntingtonsdiseaseva@gmail.com

For emergencies call 911. Mental health crisis: call or text 988. This assistant provides general information only — not medical, legal, or financial advice.

Virginia HD Resource Directory

resources listed alphabetically. Veterans resources are in the Veterans tab.

Medicare & Medicaid for HD Families

Navigating Medicare and Medicaid with Huntington's Disease is complex. This guide covers what you're entitled to, how to get it, and what HD families in Virginia need to know.

HD qualifies for SSDI's Compassionate Allowances program. Once approved, Medicare follows after a 29-month waiting period. Backpay counts, so most HD families wait far less.

How HD Patients Qualify for Medicare

Step 1: Apply for SSDI (HD qualifies under Compassionate Allowances)
Step 2: 5-month SSDI waiting period
Step 3: 24 qualifying SSDI payments — backpay counts, so most wait far less than 29 months
Step 4: Medicare Part A and Part B begin automatically

Medicare Parts A, B, C, D for HD

Part A — Hospital: Inpatient stays, skilled nursing (up to 100 days), hospice, home health. Most pay $0 premium.

Part B — Medical: HD neurologist, outpatient PT/OT/SLP, DME, home health. ~$185/month (2025).

Part C — Medicare Advantage: Bundles A+B+usually D. 143 plans in Virginia 2026. Verify HD neurologist is in-network.

Part D — Prescriptions: Covers tetrabenazine/Austedo, antidepressants, antipsychotics. Starting $0/month in Virginia.

What Medicare Covers for HD

HD neurologist (Part B) PT, OT, SLP (Part B) Durable medical equipment / AAC devices (Part B)
Home health when homebound (Part A/B) Hospice (Part A) Skilled nursing up to 100 days (Part A)
Tetrabenazine/Austedo for chorea (Part D) Psychiatric medications (Part D)
Long-term custodial care (Medicaid covers this) Most dental/vision/hearing

Medigap — Virginia 2026

Fills gaps in Original Medicare. Critical for HD families who use healthcare frequently.

Virginia Birthday Rule (July 1, 2025): 60-day window on your birthday each year to switch Medigap plans without medical underwriting — cannot be denied for HD.
Best window: Within 6 months of starting Part B.

Virginia Medigap Guide →

Virginia Medicaid — Cardinal Care

Apply: CommonHelp.virginia.gov or 1-833-522-5582
Income limit: Up to $2,901/month (2025) for disabled individuals
Processing: 45–90 days | DMAS: (804) 786-7933

Medicaid Home & Community-Based Services (HCBS) Waivers — What They Are & Why HD Families Need Them

Medicare alone does not cover the long-term personal care and support services that HD requires as the disease progresses. Medicaid HCBS waivers are the critical link — they allow individuals with HD to receive in-home care, nursing services, personal assistance, and other supports while staying at home or in the community, rather than moving into a nursing facility.

What HCBS waivers cover for HD:
Personal care attendants and home health aides
Skilled nursing visits at home
Adult day health care programs
Respite care for family caregivers
Home modifications (ramps, grab bars, widened doorways)
Assistive technology and adaptive equipment
Physical, occupational, and speech therapy at home
Personal emergency response systems (PERS)
Supported employment and day programs

Note: Why this matters for HD specifically: HD is a progressive, degenerative disease — care needs increase over time and can be significant years before end of life. HCBS waivers act as a vital safety net that allows HD patients to receive intensive, specialized care at home, delaying or avoiding nursing facility placement entirely. Because HD affects individuals in their 30s–50s — working-age adults — these waivers are often the only way to access the level of care needed while Medicare's coverage gaps remain unfilled.

In Virginia, the primary HCBS waiver for HD is the Commonwealth Coordinated Care Plus (CCC Plus) Waiver — see below. Apply as early as possible — eligibility is based on both financial need and medical necessity, and it is worth applying even if you are not yet at the most advanced stage of HD.

Commonwealth Coordinated Care Plus (CCC Plus) Waiver — Most Important for HD

No waiting list Consumer direction — hire family members as paid caregivers
Covers: Personal care, adult day, respite, home modifications, assistive technology, PT/OT/SLP
Income limit: $2,901/month — Medically Needy Pathway available if over limit

To apply: Contact local Department of Social Services for a Long-Term Services and Supports (LTSS) screening → apply for Medicaid at CommonHelp.virginia.gov

CCC Plus Waiver — DMAS →

Dual Eligible — Medicare + Medicaid Together

Many HD patients eventually qualify for both — the strongest coverage combination available.

Medicare: Hospital, doctors, therapy, prescriptions, DME

Medicaid: Personal care, adult day, respite, home modifications

Dual Special Needs Plans (D-SNP) — Best Option for Dual Eligible

Coordinates both Medicare and Medicaid through one plan — one card, one care coordinator. 5 plans in Virginia as of July 2025. Usually $0 premium.

Compare D-SNP Plans — Medicare Plan Finder →

Free Help in Virginia

Virginia Insurance Counseling and Assistance Program (VICAP) — Free Medicare counseling
1-800-552-3402 | vda.virginia.gov/vicap →

CommonHelp — Apply for Medicaid
commonhelp.virginia.gov | 1-833-522-5582

Huntington's Disease Society of America (HDSA) Social Workers
1-800-345-4372 | hdsa.org/find-help →

disAbility Law Center of Virginia (dLCV) — Medicaid denials and appeals
1-800-552-3962 | dlcv.org →

Social Security Administration (SSA)
1-800-772-1213 | ssa.gov →

Patient Advocate Foundation
1-800-532-5274 | patientadvocate.org →

SSDI & SSI for HD Families

Social Security disability benefits are often the financial lifeline for HD patients and their families.

HD is on the Compassionate Allowances list (CAL Code: DI 23022.923) — applications are expedited — cases are prioritized over standard claims. There is no guaranteed timeline; every family's case is different. Always include this code when applying.

SSDI vs SSI — Which Applies to You?

SSDI — Work-Based: For individuals who have paid into Social Security through work history. Benefit amount is based on your earnings record.

SSI — Need-Based: Monthly payments for low-income and low-asset individuals, including children and juvenile HD cases. No work history required.

SSDI
Social Security Disability Insurance

Work Credits: 40 total, 20 earned in last 10 years

SGA Limit: Must earn <$1,690/month gross (2026) — was $1,620 in 2025. This amount adjusts annually; verify the current year's limit at ssa.gov.

Medical: HD qualifies under CAL Code DI 23022.923

Leads to: Medicare (29-month wait)

No asset limit

SSI
Supplemental Security Income

Income limit: Countable income below $967/month

Asset limit: $2,000 individual / $3,000 couple

Medical: Same as SSDI — CAL applies

Leads to: Medicaid immediately

No work history required

Blue Book HD Listings: Listing 11.17 (neurological — motor/functional impairment) · Listing 12.02 (neurocognitive — cognitive symptoms) · Listing 111.17 (Juvenile HD — SSI). ABLE accounts up to $100,000 are excluded from SSI asset limits.

Onset Date — The Most Important Date

SSA starts the Medicare clock from the date you became disabled — not application date, not approval date. Documenting the earliest supportable onset date directly accelerates Medicare eligibility and maximizes back pay.

Medicare clock starts from onset date
Back pay calculated from onset date — earlier onset = more back pay
SSDI pays up to 12 months before application date
Note: Wrong onset date can cost thousands in lost benefits

Onset date = when HD symptoms first impacted your ability to work — typically EARLIER than diagnosis date.

Document with: Employer performance records, medical notes from that period, caregiver statements, neurologist letter.

Anosognosia: HD patients underestimate their own limitations. Caregiver accounts are more accurate — include them.

HDSA Disability Onset Date Worksheet →

How to Apply

1. Apply as soon as possible — the 5-month wait and 29-month Medicare clock start from onset date, not application date.
2. Apply online at ssa.gov/applyfordisability, by phone 1-800-772-1213, or in person.
3. Note: At the very beginning of your application — include this in the Remarks section: "Please flag my claim for Compassionate Allowance processing per DI 23022.923 because I have Huntington's Disease." This must be included from the start or the designation can be missed.
4. Use the earliest onset date your medical records support — not your diagnosis date.
5. Submit complete medical evidence with the application — don't wait for SSA to request it.
6. Apply for SSI simultaneously.
7. Get an attorney involved early if you plan to work with one.
8. Gather your documents before you apply — having these ready speeds the process significantly:

• Letter from your neurologist stating your diagnosis, onset date, and functional limitations — request this specifically and early
• Work history for the past 15 years (job titles, dates, duties)
• Medical records from all treating providers
• Lab results, imaging, genetic test results
• List of all medications
• Birth certificate and Social Security card

Compassionate Allowance does not guarantee any approval timeline. Cases are expedited, but timelines differ for every family. Back pay paid as lump sum pay paid as lump sum when approved. SSI has no 5-month waiting period.
⏱ Medicare wait: SSDI approval triggers a 29-month wait before Medicare begins. The clock starts from your onset date — use the earliest date your records support. The HD community is fighting to end this wait via the HD Parity Act →

Compassionate Allowance — Code DI 23022.923

DO THIS AT THE VERY START OF YOUR APPLICATION — DO NOT WAIT

HD qualifies for SSA's Compassionate Allowance program — but only if you request it at the beginning of your application. If you do not include this language from the start, your claim will be processed on the standard timeline and the Compassionate Allowance designation can be missed entirely.

Include this exact language in the Remarks section at the beginning of your SSDI/SSI application:

"Please flag my claim for Compassionate Allowance processing per DI 23022.923 because I have Huntington's Disease."

Compassionate Allowance does not guarantee any approval timeline. Cases are not fast tracked within 2–6 weeks. Cases are expedited, but it is different for every family.
You do not need a genetic test — symptom documentation alone can qualify.
Back pay is paid as a lump sum upon approval, calculated from your onset date.
⏱ Medicare wait: Once approved for SSDI, there is a 29-month waiting period before Medicare begins — 5 months SSDI waiting period + 24 months after that. The clock starts from your established onset date, not your application date. Advocate for the earliest onset date your records support.
The HD community is actively fighting to end this 29-month wait. See the HD Parity Act on the Advocacy tab →

HDSA Compassionate Allowance Guide →

Ask Allison — Free HD Disability Attorney

HDSA's Allison Bartlett, Esq. is a disability attorney and HDSA's Manager of Disability Programs who specializes exclusively in helping HD families navigate the Social Security disability process. She comes from the Caring Voice Coalition where she represented rare disease patients — including HD — in disability proceedings. Her help is free.

Ask Allison about:
• SSDI and SSI applications and eligibility for HD
• What to do if you've been denied
• Health insurance options during the Medicare waiting period
• Private disability insurance
• Benefits planning and work incentives
• Any step in the disability process you don't understand

abartlett@hdsa.org
hdsa.org/ask-allison →
HDSA Helpline: 1-800-345-HDSA

Contact Allison via HDSA Watch: How to Apply (Video)

The Medicaid Bridge — Coverage During the 29-Month Medicare Wait

Once approved for SSDI, there is a 29-month gap before Medicare begins — 5 months SSDI waiting period + 24 months. During this time you are recognized as disabled by the federal government but have no Medicare coverage. This is one of the most difficult gaps for HD families. Here are your options to bridge it:

Option 1 — Medicaid (Best Option for Most HD Families)
Virginia has expanded Medicaid under the ACA. If your income is at or below 138% of the Federal Poverty Level (~$20,783/year individual in 2025), you likely qualify for Medicaid immediately. SSI recipients qualify automatically. Apply through commonhelp.virginia.gov — apply as soon as SSDI is approved. If you receive SSI alongside SSDI, Medicaid starts immediately through SSI.

Option 2 — ACA Marketplace Plan
If you don't qualify for Medicaid, apply for a plan on the ACA Marketplace at healthcare.gov. SSDI approval is a qualifying life event that opens a Special Enrollment Period. SSDI income is often low enough to qualify for significant premium subsidies. Cannot be denied for pre-existing conditions.

Option 3 — COBRA Extension (Up to 29 Months)
If you had employer health insurance when you became disabled, COBRA allows you to continue that coverage. Important: if SSA determined your disability onset date was before your 60th day of COBRA, you can extend COBRA from the standard 18 months to 29 months — which aligns perfectly with the Medicare wait. The disability extension costs up to 150% of full premium but keeps you on the same plan.

Option 4 — Spousal or Family Coverage
If a spouse or family member has employer-sponsored coverage, this is often the most cost-effective bridge. SSDI approval may qualify as a special enrollment event for the spouse's plan.

Note: Important: Backpay months count toward the 24-month Medicare clock — meaning many HD families have already completed part or all of the wait by the time they receive their approval letter. Check your established onset date carefully.

The HD community is fighting to eliminate this wait permanently via the HD Parity Act — see the Advocacy tab →

Complete Document Checklist

Personal

Social Security card Birth certificate W-2/tax returns (last 2 years) DD-214 if veteran Bank account for direct deposit

Medical — Most Critical

HD gene test results (40+ CAG repeats — strongest evidence)
Neurologist records documenting HD symptoms and functional limitations
Brain imaging (MRI/CT) if performed
Psychiatrist/psychologist records
PT, OT, Speech therapy records
Neurologist letter stating onset date and functional limitations — request this specifically
All PCP, hospital, and specialist records

Work & Function

Work history for last 15 years
Employer records showing performance decline — reviews, accommodation letters
Third-party function report (SSA Form SSA-787) — completed by caregiver

Note: Anosognosia: HD patients underreport limitations. Have caregivers help complete function reports and write separate third-party statements.

If Denied — Don't Give Up

Most initial SSDI applications are denied — even with HD. You have 60 days from the denial date to appeal.

Level 1 — Reconsideration: Different examiner reviews. File within 60 days.
Level 2 — Administrative Law Judge (ALJ) Hearing: Highest approval rate. Get an attorney before this.
Level 3 — Appeals Council
Level 4 — Federal District Court

Attorneys work on contingency — 25% of back pay (capped at $7,200) only if you win. No upfront cost.

Free Help with Appeals in Virginia

HDSA Social Workers: 1-800-345-4372
disAbility Law Center of Virginia (dLCV): 1-800-552-3962 | dlcv.org
Legal Aid Justice Center: 1-866-534-5243 | justice4all.org
Virginia State Bar Referral: 1-800-552-7977 | vsb.org

ABLE Accounts — Save Money Without Losing Benefits

An ABLE account lets people with disabilities save money without it counting toward the SSI $2,000 asset limit or affecting Medicaid eligibility.

Up to $18,000/year contributed (2025) Up to $100,000 excluded from SSI limits
Tax-free growth Caregiver can contribute
Used for medical, housing, transportation, assistive technology, personal care
Note: Disability must have onset before age 46

Virginia ABLE Now: Open to all eligible US residents
vaable.org | 1-888-221-2921

Strategy: If close to the $2,000 SSI asset limit, move funds into an ABLE account immediately to preserve SSI eligibility.

Veterans with HD — Navigation Guide

Navigating the VA system with Huntington's Disease is one of the hardest things a veteran or family will ever do. This guide is written from real experience — not from a brochure. The system will not come to you. You have to drive every single step.

Note: A note on navigating the system: VA social workers often carry heavy caseloads and may not be familiar with HD-specific programs and needs. You may need to be your own advocate — follow up on every request, keep notes of every conversation, and don't wait for the next step to come to you.

Note: Veterans programs have specific eligibility requirements. Being a veteran with HD does not automatically qualify you for all VA programs.

Note: Before You Start — Read This

• Enroll in VA healthcare even if you have Tricare. They are completely separate systems with different benefits. Enroll in both.
• Social workers are assigned — but don't count on them. You may need to be your own case manager. Follow up on every request in writing.
• Every benefit is a separate application. Nothing automatically flows to the next thing.
• The VA will default to the Parkinson's Clinic for movement disorders. Say: "I need a neurologist experienced in Huntington's Disease specifically."
• Community Care referrals must be ordered by your doctor — not you, not the social worker.
• Watch for letters with 30-day response deadlines. Missing them can cost benefits.
• Start every application before you desperately need it. Veteran Directed Care (VDC) has a 6–8 week lead time. Program of Comprehensive Assistance for Family Caregivers (PCAFC) has weeks of intake. SSDI will likely be denied the first time.

Step 1 — Enroll in VA Healthcare

This is the first gate. Nothing else is accessible until you are enrolled. Even with Tricare or private insurance, enroll separately — it unlocks Parkinson's Disease Research, Education and Clinical Center (PADRECC), home programs, caregiver benefits, and housing grants.

Apply online — Form 10-10EZ →
Or call: 1-877-222-8387

Your Primary Care Manager (PCM) becomes your gatekeeper for all referrals. They can order Community Care referrals, assist with Aid and Attendance (A&A) applications, and complete Activities of Daily Living (ADL) assessments as needs change.

Step 2 — Meet Your VA Social Worker and Primary Care Manager (PCM) — Then Don't Wait

Request a meeting immediately. Give them a written list of everything you need. Follow up in writing every week. Keep a log of every call — date, who you spoke with, what was said, what the next step is.

Note: Real talk: Social workers are often overloaded and may not proactively advocate for you. The veterans and families who get the most benefits are persistent, organized, and follow up in writing.

Step 3 — Get HD-Specific Neurological Care (Not the Parkinson's Clinic)

Say exactly this: "I need a referral to a neurologist with experience in Huntington's Disease specifically — not just general movement disorders. Please refer me through Community Care to an HD specialist."

PADRECC Richmond: (804) 675-5000 — HD specialty hub for Virginia veterans
parkinsons.va.gov/richmond →

Step 4 — File for VA Disability Rating Immediately

Note: Real experience: An initial rating of 30% for HD was successfully appealed to 100%. The key was documenting loss of use of hands and feet, gait disturbances, and motor control loss due to chorea — all framed as Activities of Daily Living (ADL) impact.

File a claim — Form 21-526EZ →
Virginia Department of Veterans Services (VDVS): (804) 675-6546

Step 5 — Appeal for 100% Permanent and Total (P&T)

HD is terminal and progressive. A rating below 100% should almost always be appealed. 100% P&T unlocks Specially Adapted Housing (SAH) grant, vehicle grant, Civilian Health and Medical Program of the Department of Veterans Affairs (CHAMPVA), Dependents' Educational Assistance (DEA), free dental, and Priority Group 1 health care.

• 100% Schedular — conditions combine to 100%
• Total Disability Individual Unemployability (TDIU) — paid at 100% if HD prevents all employment. File VA Form 21-8940.

Step 6 — Apply for SSDI Simultaneously

VA rating and SSDI are completely separate systems. Apply for both at the same time.

Note: Real experience: SSDI was denied on the first application. Approved after appeal. Get an attorney early. Always include: "Please flag my claim for CAL processing per DI 23022.923 because I have Huntington's Disease."

SSA: 1-800-772-1213 | Virginia DDS: (804) 367-4707

Step 7 — Activate Home & Caregiver Programs

Veteran Directed Care (VDC) — 6–8 week lead time. Your Primary Care Manager (PCM) must order a consult.
Program of Comprehensive Assistance for Family Caregivers (PCAFC) — Weeks of intake. Form 10-10CG →
Aid and Attendance (A&A) — Your Primary Care Manager (PCM) or VA nurse can complete VA Form 21-2680.
Housing grants — after 100% rating is established.

You can be enrolled in both Veteran Directed Care (VDC) and Program of Comprehensive Assistance for Family Caregivers (PCAFC) simultaneously if needs are documented and high enough.

VA Disability Rating — What You Need to Know

Note: Real experience: Initial rating of 30% for HD was successfully appealed to 100% by documenting loss of use of hands and feet, gait disturbances, and motor control loss due to chorea — all articulated as Activities of Daily Living (ADL) impact.

Two paths to 100%:
• 100% Schedular: Individual or combined conditions reach 100%
• Total Disability Individual Unemployability (TDIU): Paid at 100% if HD prevents all gainful employment — VA Form 21-8940

100% Permanent and Total (P&T) unlocks:
Specially Adapted Housing (SAH) grant (up to $126,000)
Vehicle Adaptation Grant
Civilian Health and Medical Program of the Department of Veterans Affairs (CHAMPVA) for dependents
Dependents' Educational Assistance (DEA) — monthly education stipend
Free VA dental
Priority Group 1 — no copays
Virginia property tax exemption

How to Appeal a Low Rating

1. Request Rating Decision letter and Compensation & Pension (C&P) exam results
2. Get a private nexus letter from your neurologist documenting functional limitations in ADL language
3. File Supplemental Claim (new evidence) or Higher-Level Review
4. If still denied → Board of Veterans Appeals

Key appeal language for HD:
• Loss of use of extremities due to chorea and motor control loss
• Fall risk and gait instability — inability to walk without assistance
• Fine motor loss — cannot write, type, button clothing, use utensils
• Cognitive impairment affecting finances, medications, daily tasks
• Psychiatric symptoms — depression, irritability, behavioral dyscontrol

Housing Grant Hierarchy

You cannot receive both Specially Adapted Housing (SAH) and Special Home Adaptation (SHA). VA awards whichever is larger. Apply for SAH first. Home Improvements and Structural Alterations (HISA) can be used alongside SAH for specific items not covered.

Specially Adapted Housing Grant (SAH)
Amount: Up to $126,000 | Requires: 100% service-connected P&T rating
Wade Tharpe, SAH Coordinator: (877) 827-3702 ext. 221521 | wade.tharpe@va.gov
va.gov/housing-assistance/disability-housing-grants →

Special Home Adaptation Grant (SHA)
Amount: Up to $23,444 | Not awarded alongside SAH — VA gives larger grant only

Home Improvements and Structural Alterations (HISA)
Amount: Up to $6,800 (lifetime) | Can stack with SAH for specific items

Vocational Rehabilitation and Employment (VR&E) Independent Living — Chapter 31
Amount: Up to $116,000 | Form 28-1900 →

Program of Comprehensive Assistance for Family Caregivers (PCAFC)

Provides monthly stipend, health insurance (Civilian Health and Medical Program of the Department of Veterans Affairs — CHAMPVA), respite care, and mental health support for the primary caregiver.

1. Submit Form 10-10CG online
2. Initial intake phone call
3. Gather medical records — submit by deadline
4. Provide medical/healthcare directive
5. Video call or home visit with VA nurse
6. Caregiver completes required training modules
7. Direct deposit enrollment

⏱ This process takes weeks. Start immediately.

You can be enrolled in both Veteran Directed Care (VDC) and Program of Comprehensive Assistance for Family Caregivers (PCAFC) simultaneously if needs are documented and high enough.

Apply — PCAFC Form 10-10CG →

Veteran Directed Care (VDC)

Veteran controls their own care budget — including the ability to hire family members as paid caregivers.

1. Ask VA social worker to submit request to your Primary Care Manager (PCM) for a Veteran Directed Care (VDC) consult
2. Primary Care Manager (PCM) orders the consult
3. Veteran Directed Care (VDC) team contacts veteran — 6–8 week lead time
4. If no one reaches out, follow up again with social worker and Primary Care Manager (PCM)

VDC Program Guide →

Aid and Attendance (A&A) — Pension Benefit

VA pension benefit for veterans needing help with Activities of Daily Living (ADLs). Your Primary Care Manager (PCM) or VA nurse can assist with VA Form 21-2680.

VA Form 21-2680 →

Other Home & Community Programs

Home-Based Primary Care (HBPC) — Designed for veterans who are homebound or have complex medical conditions. HD often qualifies on both counts. Not available in all regions — ask your Primary Care Manager (PCM) or social worker.

Homemaker/Home Health Aide (H/HHA) — Personal care at home
Community Adult Day Healthcare (CADHC) — VA-funded adult day program
Virginia Lifespan Respite Voucher — Up to $595/year | vda.virginia.gov/vlrv →

Activities of Daily Living (ADL) Rating — The Most Important Documentation Strategy

The VA rating system responds to functional language — specifically how symptoms affect Activities of Daily Living (ADLs). Every symptom must be translated into what the veteran cannot do.

"Chorea" means little to a VA rater. "Loss of use of hands — unable to button clothing, hold utensils, or write" means everything.

HD Symptoms → Activities of Daily Living (ADL) Language

Motor → ADL:
Chorea → "Loss of use of hands — cannot grip utensils, button clothing, write, or handle objects safely"
Gait disturbance → "Loss of use of feet — cannot walk without fall risk, cannot climb stairs"
Balance → "Cannot stand without support — fall risk requires supervision for all standing activities"
Swallowing → "Cannot eat independently without choking risk"

Cognitive → ADL:
Executive dysfunction → "Cannot manage finances, medications, or daily scheduling without assistance"
Memory → "Cannot follow multi-step instructions or remember recent events"

Psychiatric → ADL:
Irritability → "Cannot interact appropriately in community or workplace settings"
Apathy → "Cannot initiate daily activities without prompting"

Who Can Document Activities of Daily Living (ADLs)

Your VA Primary Care Manager (PCM) or Nurse — can complete ADL assessments as needs change. Also assists with Aid and Attendance (A&A) applications (VA Form 21-2680).
Occupational Therapist (OT) — most qualified for ADL documentation
Caregiver statements — third-party accounts carry significant weight
HD Neurologist — should document functional limitations in every clinic note

Anosognosia note: HD patients often underestimate their own limitations. Caregiver accounts are often more accurate. Mention this to your VA team.

Special Monthly Compensation (SMC) — The Rating Scale HD Veterans Should Know

Beyond 0–100% ratings, the VA has a lettered scale called Special Monthly Compensation (SMC) for severe functional impairments. SMC is not automatically awarded. You must claim it.

SMC-K is the only level added on top of existing disability pay. All others (L through T) replace standard compensation with a higher rate. Two SMC-L qualifications combine to equal SMC-O.

SMC Level	What It Covers	HD Relevance	2026 Rate
SMC-K	Loss/loss of use of one body part — one hand, foot, eye, speech. Up to 3 awards.	Chorea causing loss of use of one hand or foot	+$139/mo Added to existing pay
SMC-L	Loss of use of both feet OR both hands OR one hand+foot; OR bedridden; OR regular Aid and Attendance needed	HD with gait loss AND hand motor loss; OR caregiver needed for ADLs	~$4,780/mo
SMC-O	Two SMC-L qualifications combined; OR full paralysis; OR most severe multi-condition combinations	Two separate SMC-L conditions combine automatically to SMC-O	~$5,891/mo
SMC-S	Permanently housebound due to service-connected disabilities	Cannot leave home safely due to gait, fall risk, or cognitive impairment	~$4,064/mo
SMC-R1	Already at SMC-O AND requires daily Aid and Attendance for all basic ADLs	Late-stage HD requiring daily caregiver for all ADLs	~$9,827/mo
SMC-R2	Same as R1 but requires licensed medical professional (nurse, certified aide)	Late-stage HD requiring skilled nursing or professional aide daily	~$11,272/mo

Note: Rates are approximate 2026 rates for a single veteran with no dependents. Verify at va.gov SMC rates →
To claim: File VA Form 21-526EZ + VA Form 21-2680 completed by physician. A Veteran Service Organization (VSO) or attorney can help identify which level applies.

Service Connection for HD — The Stress Aggravation Argument

The VA's default position is that HD is a genetic condition that existed before service and cannot be service-connected. This is not the complete legal or medical picture.

The science: CAG repeat length explains only ~60% of variation in HD onset age. Chronic stress is a documented modifier of HD onset and progression — published research demonstrates that stress accelerates memory deficits and exacerbates cellular dysfunction in HD. Military service is among the most chronically stressful environments humans experience.

Legal pathways:
1. Service Aggravation (38 CFR 3.306) — If symptoms appeared earlier than expected given the veteran's CAG repeat length, military stress may have accelerated onset beyond natural progression.
2. Presumption of Soundness — If HD was not noted on the entrance physical, VA must prove with "clear and unmistakable evidence" that HD both pre-existed service AND was not aggravated by service.
3. Earlier-Than-Expected Onset — The gap between predicted and actual onset age based on CAG repeat count is the aggravation argument.
4. Eight-Year Rule — Veterans with 8+ years of active duty have additional pathways for hereditary conditions manifesting during service.

Note: VA examiners often write that "HD cannot be aggravated" — this is scientifically contested and legally challengeable. Work with a Veteran Service Organization (VSO) or veterans attorney. Do not accept the first denial.

Veteran Service Organizations (VSOs) — Free Help

Virginia Department of Veterans Services (VDVS)
Main: (804) 675-6546 | Henrico Community Based Outpatient Clinic (CBOC): (804) 952-6112 — Doreena Miles
dvs.virginia.gov →

Disabled American Veterans (DAV)
Richmond: (804) 745-3453

American Legion
Richmond: (804) 353-6606

AMVETS
(336) 618-1466 | kathryn.miner@va.gov

disAbility Law Center of Virginia (dLCV) — Free legal help for VA and SSDI appeals
1-800-552-3962 | dlcv.org →

Vets 4 Warriors — Peer Support
1-855-838-8255

Non-VA Resources for Veterans with HD

Chive Charities — Grants for medical equipment and home modifications
chivecharities.org/recipient →

The Arc of Virginia — Statewide disability advocacy
thearcofva.org →

Virginia Lifespan Respite Voucher Program — Up to $595/year
vda.virginia.gov/vlrv →

Clinical Trials & HD Research

Find HD trials, Virginia trial sites, and research tools all in one place.

HD research is advancing rapidly with multiple promising treatments in trials right now. Always consult your HD neurologist at VCU or UVA before enrolling in any trial.

Active HD Trials Worldwide

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HD Research Tools & Resources

HD Youth Resources

Resources for children, teens, and young adults (up to 35) impacted by Huntington's Disease — and for parents navigating HD with kids at home.

You are not alone. Growing up with HD in the family — or being diagnosed young — is incredibly hard. There is a whole community of young people who understand exactly what you're going through. If you're in crisis, call or text 988 anytime.

#FacesofHD

Every face tells a story. Share yours and help end the silence around Huntington's Disease. Together we are stronger. Together we will find a cure.

The Mural — Faces of HD

Upload your photo

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HD News & Research Updates

Latest Huntington's disease news pulled live from leading HD sources.

Live feeds from HDBuzz, Huntington's Disease News, and HDSA. Updated each time you visit this tab. Facebook and social content linked below — direct embed is not available due to platform restrictions.

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Additional News Sources

HDBuzz Facebook HDSA Facebook HDVA Community HDSA News HD News Daily Google News HDBuzz.net

Advocacy

Your voice matters. People living with HD, caregivers, and at-risk family members are among the most powerful advocates for change — in Richmond, in Washington, and everywhere in between. Every contact with a legislator, every petition signature, every story shared moves the needle.

Important: Active Action Alert — May 2026

Ask Congress: Let AMT-130 Move Forward

AMT-130 is the first gene therapy developed specifically for HD, showing 75% slowing of disease progression at high dose. In late 2025 the FDA reversed prior guidance. Over 48,000 signatures were delivered to FDA headquarters on January 22, 2026. The fight continues — your message to Congress takes 60 seconds.

Full Story — HDBuzz →

Take Action — Send a Message Right Now

Choose an action below. Fill in your name and personal connection to HD, then copy and send. Pre-written scripts are provided — personalizing even one sentence makes a significant difference.

Action 1 — Ask Congress to Support AMT-130 FDA Review

Send this message to your Virginia senators and representatives. Personalize the [brackets] then use the contact links below.

Your name & connection to HD:

Send to Virginia's US Senators:
Sen. Tim Kaine: (202) 224-4024 | kaine.senate.gov/contact →
Sen. Mark Warner: (202) 224-2023 | warner.senate.gov/contact →
Find your House Representative: congress.gov/members/find-your-member →

⏱ Action 2 — Pass the HD Parity Act (End the 29-Month Medicare Wait)

HD patients approved for SSDI must wait 29 months before Medicare begins — while they are actively losing function. The HD Parity Act would eliminate this wait. Ask your representatives to co-sponsor it.

Your name & connection to HD:

Action 3 — Contact Your Virginia State Legislators

Tell your Virginia delegate and senator your HD story. Ask them to support HD-specific legislation, expanded Medicaid access, and disability services funding. The 2026 HD Proclamations are a foundation — build on them.

Your name & connection to HD:

Find your Virginia Delegate & Senator + their email:
whosmy.virginiageneralassembly.gov →
"Open in Email" opens your email app with the message pre-filled. Add your legislator's email address from the link above before sending.

Virginia State Advocacy

Virginia HD Proclamations — A Historic First

In May 2026, the Commonwealth of Virginia and the City of Richmond both issued their first-ever Huntington's Disease Proclamations — a landmark recognition of HD's impact on Virginia families. This is the result of direct community advocacy and the foundation for continued state-level action.

Next step for Virginia: Use the proclamations as a foundation to push for HD-specific budget line items, state insurance protections for genetic testing, and expanded Medicaid waiver access for HD patients.

Find & Contact Your Virginia Legislators

Your Virginia state delegates and senators represent you in Richmond. Tell them your HD story. Ask them to support HD-related legislation, Medicaid access, and disability services funding.

Find your Virginia Delegates & Senators:
whosmy.virginiageneralassembly.gov →

Virginia General Assembly — Bill tracking & contact:
virginiageneralassembly.gov →

Contact Virginia's US Senators & Representatives

Federal legislation on Medicare, Medicaid, FDA drug approval policy, and research funding all directly affect the HD community. Contact your federal representatives to demand action.

Find your federal representatives:
congress.gov/members/find-your-member →

Virginia US Senators:
Sen. Tim Kaine: (202) 224-4024 | kaine.senate.gov/contact →
Sen. Mark Warner: (202) 224-2023 | warner.senate.gov/contact →

National Advocacy

HDSA Take Action Hub — One-Click Contact to Congress

HDSA's advocacy hub lets you send a message directly to your Members of Congress in minutes. Pre-written templates are available — personalize with your own HD story for maximum impact. Current campaigns include AMT-130/FDA review, Medicare 29-month waiting period, and research funding.

hdsa.org/takeaction →
HDSA Advocacy: 1-800-345-HDSA

HDSA Annual Advocacy Forum — Washington DC (Annual, Spring)

Each spring, HDSA brings HD patients, families, and advocates to Capitol Hill for in-person meetings with Members of Congress and their staff. Training is provided — no prior experience needed. Travel and lodging assistance available.

hdsa.org/advocacyhome →

Rare Disease Week on Capitol Hill — EveryLife Foundation (February, Annual)

Annual rare disease advocacy week in Washington DC, coordinated by the EveryLife Foundation. HD community members participate alongside advocates from 200+ rare diseases for Congressional meetings, FDA Day, and NIH Rare Disease Day.

everylifefoundation.org/rare-disease-week →

Key Policy Issues Affecting HD Families

AMT-130 — FDA Approval Pathway (Active 2026)

AMT-130 (uniQure) is the first HD-specific gene therapy, showing 75% slowing of disease progression at high dose. In November 2025, the FDA reversed prior guidance, requiring additional data. The HD community mobilized — 48,000+ petition signatures, Congressional outreach, and a direct hand-delivery of petitions to FDA headquarters in January 2026. A Type A FDA meeting has been scheduled. Community advocacy directly influenced this outcome.

Why it matters: HD patients have no disease-modifying treatment. AMT-130 could be the first. Every month of delay is months of life lost for people living with HD right now.

Take action — HDSA.org/takeaction →
AMT-130 FAQ — HDSA →

⏱ HD Parity Act — End the 29-Month Medicare Wait

People approved for SSDI must wait 29 months before Medicare begins — a cruel gap for HD patients who are losing function and needing care now. The HD Parity Act would eliminate this wait for HD patients specifically.

Action: Ask your Members of Congress to co-sponsor and pass the HD Parity Act.
hdsa.org/takeaction → HD Parity Act →

NIH & Research Funding

Federal funding for the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS) directly funds HD research. Cuts to NIH funding delay or eliminate research that could produce the next HD treatment. Ask your representatives to protect and increase NIH funding.

HDSA Advocacy Hub →

How to Advocate — Tips & Scripts

Your Story Is Your Most Powerful Tool

Legislators and their staff respond to personal stories more than any statistic. When contacting your representatives:

Introduce yourself — name, city, and your connection to HD (patient, caregiver, at-risk)
State the specific ask — be clear: "I'm asking you to co-sponsor the HD Parity Act" or "Please urge the FDA to allow AMT-130 to move forward"
Make it personal — one specific sentence about how HD has affected your life is more powerful than any policy document
Follow up — a phone call after an email dramatically increases response rates
Thank them — when a legislator takes action, a thank-you note matters

Social Media Advocacy

Use these hashtags to amplify HD advocacy:
#LetsTalkAboutHD — HDSA's official awareness campaign
#HDCommunity — General HD community posts
#HuntingtonsDisease — Broad reach for awareness
#AMT130 — Gene therapy advocacy
#HDParityAct — Medicare waiting period legislation

Tag your Virginia legislators when you share your story. Post during HD Awareness Month (May) for maximum visibility.

Advocacy Tools & Organizations

Help 4 HD International — Advocacy & Patient Support

One of the organizations that hand-delivered 48,000+ petition signatures to FDA headquarters in January 2026. Provides care advocates, education, and grassroots advocacy coordination for the HD community.

help4hd.org →

HD Care — Rare Disease Week & Policy Updates

Coordinates HD community participation in Rare Disease Week on Capitol Hill and provides HD policy news and advocacy resources.

hdcare.org →

HDSA Voice of the Patient Report

A comprehensive report of the HD community's experiences, needs, and priorities — compiled to directly inform FDA and Congressional decision-making. Share it with your healthcare providers and legislators.

hdsa.org/advocacyhome → Voice of the Patient →

EveryLife Foundation for Rare Diseases

National rare disease policy organization coordinating Rare Disease Week on Capitol Hill. Provides advocacy training and connects HD advocates with broader rare disease policy coalitions.

everylifefoundation.org →

HD Events & Conferences

Upcoming events for patients, families, caregivers, and healthcare providers in Virginia and beyond. Education days, awareness walks, conferences, and community gatherings.

MAY

FRIDAY

Featured Virginia Event

Virginia Huntington's Disease Awareness & Education Day

Friday, May 15, 2026 · 3:30 PM – 6:00 PM
Startup Virginia Rooftop · 1717 E Cary St, Richmond, VA 23223

Join us to celebrate the first Huntington's Disease Proclamations by the Commonwealth of Virginia & City of Richmond. Presentation, community resource fair, and light refreshments. Space is limited — RSVP to secure your spot.
In partnership with VCU Parkinson's & Movement Disorders Center, UVA Parkinson's Disease and Movement Disorders Center, and Huntington's Disease Society of America.

RSVP — In Person → Join Virtual Livestream →

Virginia & Regional Events

HD Community Education Day — VCU & UVA (Annual)

Co-hosted annually by VCU Parkinson's & Movement Disorders Center and UVA Parkinson's & Movement Disorders Center. Covers medical updates, legal planning, caregiver resources, symptom management, and research. Open to patients, at-risk individuals, families, and healthcare providers. Scholarships available for travel.

VCU Larrick Center, 900 Turpin Street, Richmond VA 23219 (typical venue — verify annually)
VCU: (804) 828-3747 | pdcenter@vcu.edu
parkinsons.vcu.edu →

HDSA Team Hope Walk — Virginia (Annual, Spring)

Annual fundraising walk supporting HD research and services. Virginia walks held in spring — check HDSA for exact dates and locations each year. Open to all, no registration fee required to participate.

give.hdsa.org → Team Hope Walk →

National Conferences & Events

HDSA Convention (Annual, Summer)

The largest annual gathering of the HD community in the United States. Research updates, clinical presentations, caregiver workshops, peer support, and advocacy sessions. Open to patients, families, researchers, and clinicians. Financial assistance available through HDSA.

hdsa.org/convention →
1-800-345-HDSA

HD Therapeutics Conference — HDSA (Annual, February)

Annual scientific conference focused on HD drug development and research pipeline. Attended by researchers, clinicians, and industry. Patient and family sessions included. Livestream often available.

hdsa.org → HD Therapeutics Conference →

ENROLL-HD Research Days & HD Community Forums (Ongoing)

ENROLL-HD periodically hosts community forums and research briefings for HD patients and families — both in-person and virtual. Open to all ENROLL-HD participants and the broader HD community.

enroll-hd.org →

HD Awareness Month — May (Annual)

May is HD Awareness Month. International HD Awareness Day is May 15. Events, walks, and community gatherings happen throughout the month across Virginia and the country. Use #LetsTalkAboutHD on social media to share and connect.

hdsa.org/events → Find local events →

Find More Events

HDSA Events Calendar

Complete listing of all HDSA-affiliated walks, education days, fundraisers, and community events nationwide. Filter by state or date.

hdsa.org/events →

HDSA Virginia Facebook Group

Virginia-wide HD community group where local events, meetups, and announcements are posted. The most up-to-date source for Virginia-specific HD happenings.

HDSA Virginia Facebook Group →

National & Regional Resources

Note: Contact details verified May 2026. Always confirm directly with the clinic before visiting. For financial assistance at VCU, contact Virginia Coordinated Care (VCC) at (804) 628-0600 before scheduling.