Huntington's Disease Financial Planning: The Insurance Window, SSDI Strategy, and Special Needs Trust Planning

Huntington's disease creates a financial planning situation unlike almost any other condition in this guide. The disease is genetic — autosomal dominant, meaning one copy of the mutated HTT gene causes HD — and it is caused by a CAG repeat expansion that can be detected by a genetic test decades before any symptom appears. That pre-symptomatic window is the central financial planning opportunity, and the central financial planning risk. Life insurance and disability insurance companies are explicitly permitted by federal law to use genetic test results when making coverage decisions. A person who tests positive for the HD gene mutation before obtaining adequate life or disability insurance coverage may find they cannot get it at standard rates — or at all. This guide covers what that means in practice, how to sequence financial decisions relative to the genetic testing choice, how SSDI's Compassionate Allowance program provides fast-track approval once symptoms appear, and how Special Needs Trust and cognitive capacity planning must be completed while decision-making capacity is intact.

Who this affects: HD prevalence and the at-risk population

Huntington's disease affects an estimated 30,000 to 40,000 Americans with symptomatic disease, though many cases remain undiagnosed.¹ Because HD is autosomal dominant — one mutated copy of the HTT gene on chromosome 4 causes the disease — every child of an HD-affected parent has a 50% chance of inheriting the mutation. This means that for every person with manifest HD, approximately one to two additional family members are at risk and must make their own decisions about testing and planning.

HD typically manifests between ages 30 and 50, though the range extends from late teens (juvenile HD, with CAG repeats above 60) to the late 60s and beyond (late-onset HD, with repeats in the 40–42 range). The average age at death is approximately 54 to 55 years, with disease duration from motor symptom onset running 10 to 30 years.² This progression creates a three-phase financial planning framework:

• Pre-symptomatic phase (potentially 10–30 years): Gene-positive individuals who have no symptoms. Fully capable of work, legal decisions, and financial planning. This is the only window to obtain life and disability insurance at standard rates, establish comprehensive estate plans, and structure assets to protect SSI/Medicaid eligibility when symptoms eventually require benefits.
• Early-to-mid symptomatic phase (3–10+ years): Motor symptoms (chorea, coordination problems), cognitive changes, and psychiatric symptoms (depression, anxiety, irritability) emerge. May still be able to work for some years. SSDI becomes appropriate when work capacity falls below substantial gainful activity. Advance directives and trust structure must be in place before capacity is significantly impaired.
• Late-stage phase (5–15 years): Substantial care needs — personal care, swallowing and nutrition management, fall prevention, behavioral management. Full dependency on SSI, Medicaid, HCBS waiver services, and the Special Needs Trust for supplemental support.

The genetic testing decision and its financial consequences

Predictive genetic testing for HD — which can confirm whether a person has inherited the CAG repeat expansion that causes HD — is a deeply personal decision that every adult at 50% risk must make on their own terms. Financial planning does not tell you whether to test. But it does tell you that the financial consequences of testing positive differ materially depending on whether you have secured life and disability insurance coverage beforehand.

The CAG repeat and what it means

The HTT gene's CAG repeat count determines HD risk:²

The reduced penetrance range (36–39 repeats) deserves special attention in financial planning: life and disability insurance underwriters may treat a result in this range as uncertain risk, and different insurers will evaluate it differently. A person with a 36–38 repeat result who obtains insurance coverage before the result is known avoids the underwriting uncertainty entirely.

GINA: what the law protects — and what it doesn't

The Genetic Information Nondiscrimination Act (GINA), enacted in 2008, provides important but explicitly limited protections for individuals with genetic information about disease risk.

What GINA covers

• Health insurance (Title I): Group and individual health insurers may not use genetic test results or family history to determine eligibility, set premiums, or impose pre-existing condition exclusions. An ACA marketplace plan, employer group plan, or individual health plan cannot decline or charge more based on a positive HD genetic test. This protection is robust.
• Employment (Title II): Employers with 15 or more employees may not use genetic information in hiring, firing, compensation, or promotion decisions. An employer cannot require genetic testing or use an employee's HD gene-positive status as grounds for adverse employment action.

What GINA explicitly does not cover

GINA's text explicitly excludes life insurance, disability insurance, and long-term care insurance from its protections.³ This is not a gap or oversight — it was a deliberate legislative choice. The consequences are significant:

• Life insurance: A life insurer can ask whether you have had genetic testing, can ask about family history, and can use a positive HD genetic test result to decline your application or charge a rated premium reflecting significantly shortened life expectancy. For a person who has tested gene-positive, obtaining individual life insurance at standard rates after the test becomes extremely difficult.
• Long-term disability insurance: An individual LTD insurer can similarly use a positive HD genetic test to rate or decline coverage. Group LTD plans obtained through employment may offer a more accessible path, since group plans typically have open enrollment periods without individual medical underwriting — but employer plan terms vary, and supplemental coverage often requires evidence of insurability.
• Long-term care insurance: LTC insurers can decline or rate based on genetic test results. For HD, where late-stage disease often requires intensive personal care, LTC coverage is relevant to both the HD patient and — importantly — to HD-affected parents or grandparents who may be carriers with their own LTC planning needs.

Some states have extended genetic nondiscrimination protections beyond GINA's federal floor — California's CalGINA, for example, extends protections to additional contexts. But most states have not enacted comprehensive life and disability insurance protections for genetic test results, and state laws are variable and subject to change. Do not assume state protection exists in your state without verifying current law with a licensed insurance professional.

Insurance strategy: the sequence that protects coverage

For adults at 50% HD risk who have not yet pursued predictive genetic testing, the optimal insurance sequence is to secure adequate life and long-term disability coverage before the test — not after.

Life insurance before testing

Individual life insurance applications ask about family history of heritable conditions and, increasingly, about whether the applicant has undergone predictive genetic testing. An at-risk person who has not tested has not yet documented a positive result — the underwriter evaluates the application based on observed health status and disclosed family history. Many at-risk individuals in their 30s, with no symptoms and a 50% rather than 100% probability of the gene, obtain life insurance at standard or near-standard rates. An insurer is less likely to decline an application based on being "at risk" than based on confirmed gene-positive status with a 100% probability of HD onset.

Once you test positive and the result is documented, the coverage calculus changes materially. For a gene-positive individual in their 30s or 40s, the actuarial math — expected onset in the 40s or 50s, death by the mid-50s on average — makes standard-rate individual coverage very difficult to obtain from most carriers. Some insurers will offer policies with rated premiums; others will decline. The window between positive test and symptom onset is not a reliable window for life insurance purchasing at favorable rates.

If you have already tested positive, work with an independent broker experienced in impaired-risk life insurance. Some cases can be placed, particularly for individuals with longer predicted onset ages (larger CAG expansion inversely correlated with onset does not apply here — rather, it's the higher repeat ranges that mean earlier onset). Smaller coverage amounts, limited benefit period riders, or guaranteed issue group products through an employer may offer partial solutions. Do not assume that coverage is impossible without actually shopping the market through an experienced broker.

For parents and grandparents of HD-affected individuals who want to fund a Special Needs Trust, the life insurance discussion is different: they need coverage on themselves, not the HD-affected family member. If the parents are healthy, this is generally straightforward. See the Life Insurance for Special Needs Trusts guide for survivorship policy mechanics and beneficiary designation requirements.

Long-term disability insurance

Group LTD through an employer is the most accessible path for at-risk or gene-positive HD adults, since open enrollment periods typically don't require individual medical underwriting. If an employer offers LTD coverage, maximize it — including any supplemental elections that don't require evidence of insurability — as early in employment as possible.

Own-occupation LTD is preferable for professionals: it pays when the person can no longer perform their specific occupation, not just any work. HD's early cognitive and psychiatric symptoms may prevent a physician, attorney, engineer, or executive from maintaining their demanding career while they remain technically capable of less cognitively demanding work. Own-occupation coverage provides the more protective standard for this population.

Long-term care insurance

LTC insurance has become increasingly difficult to obtain at affordable premiums for any applicant with longevity and health risk, not just HD families. For HD adults who have tested gene-positive, individual LTC coverage is typically unavailable. For at-risk adults who have not tested, LTC coverage is more accessible but still subject to underwriting. For the HD patient's parents and siblings — who may themselves be at reduced or no risk — LTC planning is separate and should not be conflated with HD planning.

SSDI: Compassionate Allowance fast-track under Listing 11.17

Once HD symptoms are clinically manifest and disabling, Social Security Disability Insurance qualification follows a path that is faster than most conditions.

Compassionate Allowances: fast-track approval

Adult-Onset Huntington's Disease is included in the SSA's Compassionate Allowances (CAL) program, which is designed to identify and rapidly approve applications for conditions that are clearly and inherently disabling.⁴ An application meeting the CAL criteria — typically, a confirmed genetic test showing full-penetrance CAG expansion plus documented clinical symptoms — can be approved in approximately 10 days, compared to the standard 3–6 month review process. CAL does not change the benefit amount or rules; it accelerates the decision.

Importantly, CAL applies to manifest HD — the presence of both the genetic mutation and clinical symptoms. Pre-symptomatic HD gene carriers do not qualify for SSDI. If you are gene-positive but asymptomatic, you remain in the pre-symptomatic phase and are not SSDI-eligible regardless of your genetic test result.

SSA Blue Book Listing 11.17

HD applications that proceed through standard review (rather than CAL) are evaluated under SSA Blue Book Section 11.17, Neurodegenerative disorders of the central nervous system, which explicitly names Huntington's disease alongside Friedreich's ataxia and spinocerebellar degeneration.⁵ The listing requires either:

• 11.17A: Disorganization of motor function in two extremities, resulting in an extreme limitation in the ability to stand up from a seated position, balance while standing or walking, or use the upper extremities — lasting or expected to last 12 months; OR
• 11.17B: Marked limitation in physical functioning, AND marked limitation in at least one of: understanding, remembering, or applying information; interacting with others; concentrating, persisting, or maintaining pace; or adapting or managing oneself — lasting or expected to last 12 months.

HD's combination of motor choreiform movements and progressive cognitive impairment typically satisfies 11.17A, 11.17B, or both once symptoms have advanced. For HD applicants whose primary presentation is cognitive rather than motor — which can occur, particularly in early disease — SSA may evaluate the application under Listing 12.02 (Neurocognitive Disorders) instead of or in addition to 11.17.

The Medicare gap and transition planning

SSDI entitlement triggers a 5-month waiting period and then a 24-month waiting period before Medicare begins — 29 months total from disability onset. For HD adults transitioning from employer health insurance, this gap must be bridged. Options include:

• COBRA disability extension (29 months): When SSA determines disability existed at the time of job loss or reduction in hours, the standard 18-month COBRA period extends to 29 months — precisely covering the Medicare gap. Full COBRA premiums apply, typically $600–$1,500+/month.
• ACA Marketplace plan: ACA plans cannot exclude pre-existing conditions including HD. For HD adults with low income during the SSDI gap, advanced premium tax credits may make marketplace coverage more affordable than COBRA.
• Medicaid: If the HD adult has low income and limited assets, state Medicaid may cover them during the SSDI gap. An SNT established before this transition protects any existing assets from counting toward Medicaid's resource limit.

Cognitive capacity: the planning window that closes

HD creates a uniquely urgent estate planning imperative: cognitive decline is a core feature of the disease, not a possible complication. All five foundational estate and financial planning documents must be executed while the HD adult has full legal and cognitive capacity — which means doing this work well before symptoms become significant, ideally during the pre-symptomatic or early symptomatic phase.

Documents that must be in place before capacity declines

• Durable financial power of attorney: Authorizes a trusted person to manage finances and sign legal documents when the HD adult cannot. If the HD adult loses capacity before a DPOA is executed, a court-appointed conservatorship may be required — a costly, time-consuming, and often contentious process.
• Healthcare proxy / medical power of attorney: Names someone to make medical decisions when the HD adult cannot. HD's late stage includes swallowing impairment, aspiration risk, and capacity for psychiatric crises — having a named healthcare agent with clear guidance reduces conflict and ensures the HD adult's preferences are honored.
• Psychiatric advance directive: Documents the HD adult's preferences for psychiatric treatment during periods of impaired judgment — particularly relevant given HD's high rates of depression, anxiety, and in some cases psychosis. Some states have specific statutory forms.
• Revocable living trust: Allows the HD adult to manage their own assets while able, with a successor trustee (person or institution) taking over seamlessly when capacity is impaired or at death. Avoids the probate process and provides for ongoing asset management without court supervision.
• Will and beneficiary designation audit: Updates all bequests and beneficiary designations to route assets appropriately — whether to a surviving spouse, children, or through an SNT if any heir is on means-tested benefits.

Unlike some conditions where capacity may be preserved indefinitely or decline only in late stages, HD's cognitive impairment is progressive and predictable. Psychiatric symptoms — depression, obsessive-compulsive behavior, irritability — often appear early and can affect judgment years before full incapacity. An HD adult who waits until they "feel like they're slipping" to address these documents may wait too long. The standard recommendation from the HD clinical community is to address legal capacity planning at the time of gene-positive diagnosis, while capacity is unambiguous.

Special Needs Trust planning for HD families

The SNT structure for HD families depends on the relationship and whose assets are being protected.

Third-party SNT: parents and family members planning for an HD adult

A third-party SNT allows parents, grandparents, and siblings to leave assets for an HD family member without destroying their SSI and Medicaid eligibility. A direct bequest, beneficiary designation, or substantial gift to an HD adult who is receiving SSI immediately counts as a resource and ends SSI and Medicaid once the $2,000 countable resource limit is exceeded. A third-party SNT holds the inherited or gifted assets for the HD adult's benefit while preserving both benefits.

Unlike some conditions where the beneficiary may live into their 70s or 80s, HD's planning horizon for the trust is typically defined by the disease itself: from onset to death averages 10 to 30 years. A third-party SNT established by a parent today for an HD adult child who is currently pre-symptomatic in their 30s may fund 20–30 years of supplemental support. The key SNT sizing questions for HD:

• What care setting will be needed and when? Home care in early HD transitions to more intensive residential care in late HD.
• How does the SNT complement HCBS waiver coverage, if available? A physical disability HCBS waiver can fund personal care aide hours that the SNT would otherwise need to cover privately.
• What supplemental costs does the SNT cover that Medicaid does not? Dental care, neuropsychiatric medications not on formulary, physical and speech therapy, adaptive equipment, safety modifications to the home, respite for family caregivers.

Use the Special Needs Trust Funding Calculator to model the funding need across both an early-onset and a late-onset scenario, and size the trust to the higher estimate.

Third-party SNT: HD adults planning for their own at-risk children

An HD-affected parent faces a planning challenge that cuts in two directions: their own disability planning, and planning for children who have a 50% chance of inheriting the mutation. HD adults who have children should ensure that their estate plan does not create a direct inheritance for a child who may later develop HD and be on SSI. If a child eventually tests gene-positive and goes on SSI, an inherited IRA or life insurance payout paid directly to that child will destroy their benefits. Incorporating flexible SNT planning into the HD parent's estate — structures that can accommodate a child who may or may not be on means-tested benefits — is an important part of HD family planning.

First-party SNT: when an HD adult receives direct assets

A first-party SNT, established under 42 U.S.C. § 1396p(d)(4)(A), is used when an HD adult on SSI/Medicaid receives assets directly that would otherwise destroy benefit eligibility — through an inheritance from a family member who did not have a third-party SNT, through a personal injury settlement, or through other sources. The trust must be established before the HD adult turns 65, must be established by a parent, grandparent, legal guardian, or court, and must include a Medicaid payback provision. See the First-Party vs Third-Party SNT guide for complete mechanics.

For HD adults: if you receive a direct inheritance while on SSI, consult a special needs attorney immediately and do not spend the money in anticipation of retaining Medicaid. There may be a narrow window — varying by state — to move assets into a qualifying trust structure. Acting quickly and with legal guidance is essential.

Retirement account and life insurance beneficiary designations

Parents of HD adults with retirement accounts — IRAs, 401(k)s — must review all beneficiary designations. Naming an HD adult who is on SSI directly as a beneficiary will cause the inherited balance to count as a resource, immediately ending SSI and Medicaid. The correct structure is to name the SNT as beneficiary, with the HD adult as the trust's beneficiary. SECURE Act disabled EDB rules provide a lifetime stretch for retirement accounts inherited through a qualifying trust. See the Retirement Accounts and Special Needs guide for the full four-part see-through test and drafting requirements.

ABLE account for HD adults

HD adults who receive SSI may open an ABLE account — a beneficiary-controlled savings vehicle that does not count toward the SSI $2,000 resource limit (up to $100,000 in the account). Key 2026 rules:⁶

• Age eligibility: Disability onset before age 46. For HD adults whose symptoms appeared before age 46 — which includes most adults with full-penetrance expansion in the 40–50 repeat range — ABLE is available. Adults with late-onset HD (onset at 50+) do not qualify, as the onset exceeds the age-46 limit.
• Annual contribution limit: $20,000 from all sources in 2026.
• ABLE-to-Work: HD adults who are still working — particularly those in early symptomatic phases who maintain employment — can contribute an additional $15,650 from earned income above the standard limit.
• Qualified disability expenses relevant to HD: Neuropsychiatric medications and co-pays, physical therapy, speech therapy, occupational therapy, assistive technology (voice-control devices, communication aids for when speech is affected), home safety modifications (grab bars, fall-prevention equipment), transportation to medical appointments, respite care contributions, and adaptive recreational activities that support quality of life.

The ABLE account works in combination with the SNT: the ABLE account gives the HD adult direct control over funds for ongoing disability-related expenses, while the SNT holds larger inherited or insurance proceeds under trustee management. Both should be in place for an HD adult on SSI with more than nominal assets.

Spousal and caregiver financial impact

HD is a 10–30 year progressive disease that imposes severe caregiving demands on spouses and partners — demands that peak in the HD adult's 50s and 60s, often while the caregiver spouse is still approaching their own retirement. A financially complete HD plan addresses the caregiver spouse's financial wellbeing, not only the HD patient's.

• Income protection for the caregiver: If the HD patient's income was significant, life and disability insurance on the HD patient — secured during the pre-symptomatic window — protects the household against both early death and income loss during the working phase. The caregiver spouse's own income and benefit continuity during caregiving years must be modeled.
• Retirement planning with a caregiving interruption: Spousal caregivers often reduce their own work hours or exit the workforce during late-stage HD caregiving, reducing their own Social Security earnings record and retirement savings contributions. A financial plan for the family should model the caregiver's retirement needs including this earnings interruption.
• HCBS waiver application: Applying for an HCBS physical disability or HD-specific waiver slot as early as possible reduces the caregiving burden that falls to the spouse. Waitlists of 1–5+ years are common. Apply now regardless of current care intensity. See the HCBS Medicaid Waiver guide for enrollment strategy.
• Respite care planning: Professional respite care is a SNT-allowable distribution. Budgeting for regular respite — during which the caregiver is genuinely relieved of responsibility — is essential to preventing caregiver burnout and associated health deterioration.

HDSA resources and HD-specialized planning

The Huntington's Disease Society of America (HDSA) maintains a national network of HD Centers of Excellence and social workers who can connect families with financial planning resources specific to HD. HDSA social workers are familiar with the insurance and benefits landscape for HD and can provide referrals to HD-informed legal and financial professionals in your area. HDSA also maintains guidance on SSDI and VA benefits for HD at its website.⁷

Priority actions for HD adults and families

1. Secure life and LTD insurance before predictive genetic testing, if possible. If you are at 50% risk and considering genetic testing, consult an independent insurance broker about your current coverage levels before scheduling the test. Obtain adequate coverage at whatever rates you qualify for now — before the test result is documented — so the question of post-test underwriting becomes irrelevant for your existing policies.
2. Execute all legal capacity documents now. Gene-positive HD adults — even those with no current symptoms — should execute a durable financial power of attorney, healthcare proxy, psychiatric advance directive, and revocable trust before any cognitive impairment is documented. These documents cannot be executed once legal capacity is substantially impaired. There is no advantage to waiting.
3. Establish a third-party SNT in parents' estate plans. Parents of HD adults receiving SSI should update all wills, trusts, and beneficiary designations to route assets through an SNT rather than to the HD adult directly. A direct bequest or IRA designation to an SSI recipient destroys their Medicaid. This step requires a special needs attorney familiar with both SNT structure and HD-specific planning.
4. Audit all beneficiary designations. Replace any direct beneficiary designations naming the HD adult on SSI with a designation to the third-party SNT. IRAs, 401(k)s, life insurance policies, and bank transfer-on-death designations should all be reviewed.
5. Apply for HCBS physical disability waiver immediately. Waitlists are long. An HD adult who is pre-symptomatic today may need intensive personal care in 5–10 years. Apply now and maintain the waitlist position through the pre-symptomatic years.
6. Open an ABLE account for HD adults on SSI who are under age 46 at onset. The ABLE account provides a savings vehicle beyond the SSI resource limit and can fund qualified disability expenses directly. Any state's plan is available regardless of residence — choose based on investment options and fees.
7. File for SSDI through the Compassionate Allowance program when symptoms become disabling. Once HD symptoms impair the ability to maintain substantial gainful activity ($1,690/month in 2026), file for SSDI immediately. The CAL designation means a gene-confirmed, clinically documented HD case can be approved in approximately 10 days. Do not delay filing while awaiting disease progression — the CAL process rewards timely documentation.
8. Work with a financial planner experienced in HD caregiving math. The spousal income reduction, caregiving cost projections, and retirement planning adjustments for HD are specialized. A generalist financial planner who has never modeled a 20-year HD caregiving scenario will not give you an adequate retirement projection. A fee-only special needs specialist who has worked with HD families is the right starting point.

Sources

1. Huntington's Disease in the United States: Variation by Demographic and Socioeconomic Factors — PMC / Neurology. As many as 40,000 persons in the United States may have manifest HD, with many cases undiagnosed. Prevalence rate estimated at 6.52 per 100,000 in Medicare/Medicaid data (2003–2016). Traditional estimate of 30,000 Americans with HD reflects a lower bound. Because HD is autosomal dominant (50% heritance), approximately 200,000 Americans are estimated to be at 50% risk. Incidence estimated at 1.21 per 100,000 in North America.
2. Huntington Disease — StatPearls, NIH Bookshelf. HD is caused by CAG repeat expansion (≥36 repeats) in the HTT gene on chromosome 4. Full penetrance at ≥40 repeats; reduced penetrance at 36–39 repeats (may or may not develop HD). Age at onset inversely correlated with CAG repeat length — typically 30–50 years for most affected adults. Juvenile HD (onset <20) associated with CAG >60. Average age at death: 54–55 years. Disease duration from motor symptom onset: 10–30 years. Cognitive decline, motor choreiform movements, and psychiatric symptoms (depression, anxiety, irritability, psychosis) are core features.
3. Genetic Discrimination — National Human Genome Research Institute, NIH. GINA (Genetic Information Nondiscrimination Act, 2008): Title I prohibits use of genetic information by group and individual health insurers for eligibility, premiums, or pre-existing condition exclusions. Title II prohibits employer use of genetic information in employment decisions for employers with 15+ employees. GINA explicitly does not apply to life insurance, disability insurance, or long-term care insurance — these insurers may legally use genetic test results and family history in underwriting decisions. State laws vary: some states (e.g., California's CalGINA) extend protections beyond GINA to additional contexts, but most states have not enacted comprehensive life or disability insurance genetic nondiscrimination protections.
4. SSA — Compassionate Allowances: Complete List of Conditions. Adult-Onset Huntington's Disease is included in SSA's Compassionate Allowances (CAL) program. CAL conditions receive expedited SSDI/SSI processing — approval in approximately 10 days for confirmed cases. CAL does not change eligibility criteria; it accelerates administrative review. Requires documented clinical symptoms plus confirmatory genetic test (CAG repeat ≥40) or equivalent clinical confirmation. Pre-symptomatic HD gene carriers do not qualify for CAL SSDI.
5. SSA Blue Book — 11.00 Neurological Disorders, Adult, including Listing 11.17. Section 11.17: Neurodegenerative disorders of the central nervous system, such as Huntington's disease, Friedreich's ataxia, and spinocerebellar degeneration. Criteria: 11.17A: disorganization of motor function in two extremities causing extreme limitation in ability to stand from seated, balance while standing or walking, or use upper extremities; OR 11.17B: marked limitation in physical functioning AND marked limitation in one of understanding/remembering/applying information, interacting with others, concentrating/persisting/maintaining pace, or adapting/managing oneself. Duration 12 months or expected to last 12 months. Alternatively evaluated under 12.02 (Neurocognitive Disorders) for primarily cognitive presentation.
6. ABLE National Resource Center — 2026 Contribution Limits and Eligibility. Annual ABLE contribution limit: $20,000 from all sources (2026). ABLE-to-Work: working beneficiaries may contribute additional amount up to federal poverty level for one-person household ($15,650 in 2026) from earned income. Age eligibility: disability onset before age 46, effective January 2026 (ABLE Age Adjustment Act). SSI protection: ABLE account balance up to $100,000 does not count toward SSI's $2,000 resource limit. Qualified disability expenses include transportation, health and wellness, housing, education, employment training, assistive technology, and financial management services. Any state's ABLE plan is available to any eligible beneficiary regardless of state of residence.
7. Huntington's Disease Society of America — Disability Benefits and HD. HDSA provides guidance on SSDI, SSI, VA benefits, and state disability programs for individuals with HD. HDSA Centers of Excellence include social workers familiar with the benefits and financial planning landscape for HD. HDSA's social work staff can provide referrals to HD-informed attorneys and financial planners. HDSA national helpline: 1-800-345-HDSA. HDSA notes that HD's CAL status means SSDI decisions for documented HD cases are typically issued within 10 days of SSA receiving the file.

Rules verified against 2026 SSA, IRS, and ABLE standards. SSI FBR $994/month; SSI resource limit $2,000 (2026). SSDI SGA $1,690/month (non-blind, 2026). ABLE contribution limit $20,000/year; ABLE-to-Work additional $15,650/year; age eligibility onset before 46 (all 2026). HD prevalence ~30,000–40,000 Americans symptomatic; ~200,000 at risk (autosomal dominant). CAG repeat thresholds: full penetrance ≥40; reduced penetrance 36–39. GINA (2008) protections: health insurance and employment only — explicitly excludes life, disability, and LTC insurance. SSA Compassionate Allowance for Adult-Onset Huntington's Disease: ~10-day processing for confirmed symptomatic cases. This guide does not constitute financial, legal, tax, or insurance advice.