Muscular Dystrophy Financial Planning: SNT Strategy, Medication Costs, and Cardiomyopathy Planning

Duchenne muscular dystrophy (DMD) affects approximately 1 in 3,500 male births — about 300,000 people worldwide, with roughly 15,000 in the United States.¹ Thanks to advances in cardiac and respiratory management, many young men with DMD are now surviving into their late 20s, 30s, and in some cases beyond — a meaningful shift from historical life expectancy of the late teens. That longer horizon is good news. It also means the financial plan must sustain 30–40 years of support, not 10–15 — and that plan must account for one of the most expensive treatment landscapes of any disability category. This guide addresses what DMD and Becker muscular dystrophy (BMD) families need to know that most general special-needs planning resources don't cover.

Why muscular dystrophy financial planning is different

Special-needs planning covers SSI, Special Needs Trusts, and ABLE accounts. All of that applies to MD families — but muscular dystrophy presents specific financial challenges that generic disability planning guides miss:

• Medication costs are unlike any other disability category. Exon-skipping therapies for DMD carry annual list prices of $300,000–$1,000,000+. The gene therapy Elevidys (delandistrogene moxeparvovec) was priced at $3.2 million as a one-time infusion. Even corticosteroids — the long-standing standard of care — cost $35,000+ per year at list price for brand-name deflazacort. For most families, insurance and assistance programs cover much of this now. But the SNT must plan for coverage gaps, out-of-pocket maximums, and the unknown future state of medication insurance coverage when the person with DMD is an adult with no employer coverage.
• The planning horizon has lengthened dramatically. DMD was historically a disease of childhood and adolescence, with median survival in the late teens for cohorts born before the era of cardiac and respiratory interventions. Modern corticosteroids, cardiac ACE inhibitors and beta-blockers, and noninvasive ventilation have extended life expectancy substantially. Today, many young men with DMD reach their 30s, and a growing cohort are surviving into their 40s with intensive management. A financial plan that assumes a short horizon will leave the SNT insolvent at exactly the point when care needs are most intensive.
• Cardiomyopathy is now the primary cause of death — and has major financial implications. As respiratory care has improved, dilated cardiomyopathy has emerged as the leading cause of mortality in DMD.² Nearly all people with DMD develop cardiomyopathy by adulthood, with early signs appearing as young as age 6–10. This is not a distant risk to plan around; it is a near-certain medical trajectory that affects life insurance planning, SNT funding targets, and long-term care coordination.
• Equipment needs are significant and recurring. Power wheelchairs for DMD users — who need tilt-in-space and recline functions for pressure relief — run $18,000–$35,000+ and require replacement every 5–7 years. Respiratory support equipment (BiPAP machines, cough-assist devices, and eventually mechanical ventilators for those who choose them) adds $10,000–$40,000+ in durable medical equipment. Accessible vehicle conversions cost $50,000–$100,000+. These costs are legitimate, plannable, and should be modeled in the SNT.
• Becker MD creates a very different planning picture. Becker muscular dystrophy is the allelic variant of DMD — same gene, different severity. Many men with Becker MD work careers, drive, and maintain high independence into their 40s, 50s, or beyond. For Becker families, the financial plan looks less like a lifetime-support SNT and more like a disability income protection plan with late-life SNT contingencies. Treating "muscular dystrophy" uniformly misses this divide entirely.

Types of muscular dystrophy and their planning profiles

There are more than 30 types of muscular dystrophy, but three account for most of the families seeking specialized financial planning:

This guide focuses primarily on DMD, where planning complexity is highest, but most principles apply to BMD and other forms where the person qualifies for SSI or will eventually require substantial support.

Medication costs: the most distinctive planning challenge

No other disability category has anything quite like the DMD medication landscape — treatments with list prices in the hundreds of thousands to millions of dollars per year. Understanding these costs, how they're covered today, and how that coverage may change over the person's lifetime is a core part of the financial plan.

Corticosteroids: the long-term standard of care

Prednisone and deflazacort (brand name Emflaza) are the established standard of care for DMD. Both slow disease progression by reducing inflammation and preserving muscle function. Deflazacort has advantages in side-effect profile but carries a list price starting at approximately $35,000/year for a 25 kg child — scaling upward with weight, which means adult patients pay substantially more.³ Vamorolone (brand name Agamree), a newer steroid analog approved in 2023 with a reduced side-effect profile, is in a similar price tier. For most families on Medicaid or with insurance, out-of-pocket costs are manageable. The planning issue arises in adulthood, when the person with DMD may be on Medicaid only, and prior authorization battles, formulary changes, or Medicaid carve-outs can disrupt access.

Exon-skipping therapies: $300K–$1M+/year

Exon-skipping drugs target specific DMD gene mutations and have annual list prices of roughly $300,000 to over $1 million.⁴ Eteplirsen (Exondys 51, for exon 51 skipping) was the first approved and is applicable to approximately 13% of DMD patients. Subsequent approvals cover exon 45, 53, and 53 skipping, extending eligibility to additional mutations. Insurers typically cover these therapies for eligible patients, but prior authorization must be renewed periodically. The planning risk: as the person with DMD ages out of pediatric Medicaid (age 19 in most states) and enters adult Medicaid or becomes uninsured, coverage continuity is not guaranteed. The SNT should carry a contingency reserve for medication co-pays or coverage gaps.

Gene therapy: Elevidys ($3.2 million, evolving eligibility)

Elevidys (delandistrogene moxeparvovec-rokl), approved by the FDA in June 2023, became the first gene therapy for DMD and is currently the second most expensive drug in the United States at a list price of $3.2 million for a single infusion.⁵ Important planning notes:

• Current indication (as of 2026): Ambulatory patients 4 years and older. In June 2025, the FDA revised the prescribing label to remove the non-ambulatory indication following reports of fatal acute liver failure in non-ambulatory patients. Families with non-ambulatory children should discuss this with their neurologist; the clinical landscape is still evolving.
• Insurance coverage: Major insurers and Medicaid programs are covering Elevidys for eligible patients, but coverage criteria vary and are subject to change. The one-time nature of the therapy means that SNT planning should treat it as a contingency rather than a certainty — if insurance covers it, the SNT doesn't need to fund it; if coverage is denied, the cost is otherwise unmanageable for most families.
• Effect on the financial plan: Gene therapy does not cure DMD but may slow progression. A child who receives Elevidys may have a different functional trajectory than one who does not — which affects long-term SNT sizing. This uncertainty is best managed by building a range into the plan rather than betting on a single trajectory.

Equipment costs and SNT planning

DMD equipment needs are significant, recurring, and often undercovered by Medicaid — making the SNT the primary vehicle for equipment gap funding.

Medicaid does cover durable medical equipment, but coverage rules, prior authorization requirements, and replacement schedules often fall short of what DMD patients actually need. The SNT bridges that gap — and the gap is material. A planning model that assumes Medicaid covers all equipment needs will underfund the SNT.

Cardiomyopathy: the financial planning implications

Dilated cardiomyopathy is a near-universal feature of DMD. Cardiac involvement is detectable in many patients by age 10 and present in virtually all patients by their 20s. As respiratory management has extended life, cardiomyopathy has become the primary cause of death in DMD.² For financial planning, this has several implications:

• Life insurance becomes difficult to obtain with age. Once cardiomyopathy is documented — often by the mid-teens — standard life insurance is unavailable for the person with DMD. For parents, this means the survivorship life insurance policy funding the SNT must be secured before health conditions that affect the parents' insurability develop. The life insurance procurement discussion should happen as soon as the family begins thinking about SNT planning — not after a parent's health event narrows options.
• Cardiac medications are a lifelong recurring cost. ACE inhibitors and beta-blockers are the standard of care for DMD cardiomyopathy and are typically started in the teens even before symptoms appear. These are relatively inexpensive generics — but ongoing cardiac echocardiograms (recommended every 1–2 years, more frequently as disease progresses) and potential future cardiac interventions (implantable cardioverter-defibrillator, cardiac resynchronization, or transplant evaluation) add to the cost profile.
• Cardiac events can create sudden first-party SNT situations. If a person with DMD receives a personal injury settlement, insurance payout, or inheritance directly in their name, that money exceeds SSI's $2,000 resource limit and destroys Medicaid eligibility. A first-party Special Needs Trust (also called a d4A trust) must be established before any lump sum is received. DMD families should have a first-party SNT framework ready — the time to plan this is before the cardiac event that triggers a settlement, not after.

SNT sizing for DMD: the 30–40 year model

The central challenge in DMD financial planning is that the SNT must fund a long and cost-intensive life, with significant uncertainty about both trajectory and longevity. A framework for sizing the SNT:

Phase 1: Early adulthood (ages 18–30)

SSI begins covering basic living expenses ($994/month in 2026). Medicaid covers medications and primary equipment. The SNT primarily funds the gap: co-pays, equipment upgrades, accessible transportation, community participation, and technology (computer, communication devices, recreational equipment). Cost estimate: $15,000–$40,000/year in SNT distributions.

Phase 2: Mid-adult (ages 30–40)

Respiratory support intensifies. Personal care attendant needs may increase as upper extremity function declines. Cardiac management becomes more active. If living in the family home, home modifications are complete but maintenance and replacement begin. If living in supported living or group home, HCBS waiver funding should be covering residential support — but waiver gaps require SNT backup. Cost estimate: $30,000–$70,000/year in SNT distributions.

Phase 3: Late adult (ages 40+)

Intensive ventilator support (if chosen), potentially 24-hour personal care, full-time nursing coordination, cardiac end-stage management. If waiver funding is in place, SNT fills gaps. If not, SNT bears full care costs. This is the phase where planning shortfalls become catastrophic. Cost estimate for full SNT-funded care without waiver coverage: $60,000–$150,000+/year.

SNT funding target

As a starting point: use the Lifetime Care Cost Projection Calculator with the "supported living" preset ($30,000/year base support need) and a life expectancy of 55–65 for DMD planning in the modern era. Then use the SNT Funding Calculator to determine the trust corpus needed, net of SSI and expected HCBS waiver coverage. Many DMD families arrive at SNT funding targets of $800,000–$2,000,000+ for full phase-3 coverage. A survivorship life insurance policy (owned by an ILIT or the SNT itself) is typically the most cost-efficient way to guarantee that corpus arrives at parental death.

SSI eligibility and DMD

DMD qualifies under SSA's Compassionate Allowances program, which fast-tracks approval for conditions with strong medical evidence — typically within 10–14 days rather than the standard 3–6 months. SSI applications should be filed by the 18th birthday (or on behalf of the child before 18 if family income/assets are low enough). Key rules:

• Before 18: Parental income and assets are deemed to the child. Many DMD families with middle-class incomes don't qualify for SSI during childhood — but should apply at 18 when deeming ends and the child's own limited income determines eligibility.
• 2026 FBR: $994/month for an eligible individual.⁶
• Resource limit: $2,000 in countable assets (not counting the SNT, ABLE account, or primary residence). The SNT must be established and any assets transferred before they hit this limit.
• Medicaid follows SSI: In most states, SSI eligibility triggers Medicaid automatically — which is the critical link for medication and equipment coverage.

SSI work incentives for Becker MD and higher-functioning DMD

Some men with Becker MD work well into their careers. SSI work incentives allow earned income without immediate loss of benefits:

• Earned income exclusion: SSA disregards the first $85/month of earned income, then counts 50 cents on the dollar above that. A person earning $1,000/month reduces SSI by only $457.50 — keeping both income and partial benefits.
• IRWE (Impairment-Related Work Expenses): Work-related disability expenses (personal care attendant hours needed for work, wheelchair maintenance, accessible commuting) are deducted before calculating countable income. For BMD workers with attendant care costs, IRWEs can preserve significant SSI.
• Section 1619(b) Medicaid protection: Even if earnings exceed SGA ($1,690/month in 2026), Medicaid continues as long as earnings remain below the state threshold (typically $50,000–$60,000/year). This is critical for BMD workers who need high-cost medications.
• ABLE-to-Work: Working BMD adults can contribute an additional $15,650/year (2026) to their ABLE account beyond the standard $20,000 limit — funded from earned income.

ABLE account for DMD and Becker MD

ABLE accounts are well-suited to the DMD planning model:

• DMD adults on SSI: ABLE accounts can hold up to $100,000 without affecting SSI eligibility. They're ideal for equipment co-pays, technology, accessible transportation costs, and other day-to-day disability expenses that the SNT trustee would otherwise need to approve on a case-by-case basis. ABLE gives the beneficiary direct control.
• Becker MD adults who work: ABLE accounts protect savings from SSI's $2,000 resource cap. A BMD adult can accumulate up to $100,000 in an ABLE account without risking SSI or Medicaid, and can use it for any disability-related expense.
• 2026 contribution limit: $20,000/year from all sources. Working beneficiaries can contribute an additional $15,650 from earned income.⁷
• Age eligibility: Disability onset must have occurred before age 46 (expanded from 26 by the ABLE Age Adjustment Act, effective January 2026). DMD diagnosed in childhood easily meets this criterion.
• SNT + ABLE coordination: For large equipment purchases or medical costs, the SNT funds the expense directly. ABLE handles smaller ongoing expenses where beneficiary-directed spending is practical. The two accounts are complementary, not duplicative.

HCBS Medicaid waiver: applying early matters most for DMD

Home and community-based services waivers fund personal care attendant hours, day programs, residential support, and — in some states — vehicle modifications and home adaptations. Two waiver types are relevant for DMD:

• Physical disability / acquired brain injury waiver: Available in most states for adults with physical disabilities who do not have an intellectual disability. Covers personal care attendant hours and other community support. Waitlists vary from under a year (rare) to 5+ years.
• Technology-dependent waiver: Some states have specific waivers for ventilator-dependent individuals. These waivers often include skilled nursing and respiratory therapy components not available under standard physical disability waivers. Waitlists may be shorter than developmental-disability waivers, but availability is state-specific.

Apply to all applicable waivers now. Most states allow waitlist enrollment at any age and any disease stage — waiting until ventilator support is imminent means waiting 3–7 more years for services. See the HCBS Medicaid Waiver guide for the full application framework.

Disabled Adult Child (DAC) Social Security benefits

When a parent of a person with DMD retires, becomes disabled, or dies, the person with DMD may qualify for Disabled Adult Child (DAC) benefits on the parent's Social Security record. DAC benefits pay 50% of the parent's Primary Insurance Amount (PIA) while the parent lives, and up to 75% when the parent dies. For a parent with a $2,500/month Social Security benefit, that's $1,250–$1,875/month for the child with DMD.

Important: DAC benefits can reduce SSI dollar-for-dollar above the $20/month unearned income exclusion — but they may also bring Medicare eligibility after a 24-month waiting period, which is valuable for medication coverage. The interaction between DAC, SSI, Medicaid, and Medicare is one of the more complex benefit planning scenarios in special-needs work. A specialist advisor will model all four simultaneously.

The three-professional team for DMD financial planning

DMD financial planning requires coordination across three professionals who must work together, not sequentially:

1. Fee-only financial advisor specializing in special needs: Models the multi-phase cost projection, sizes the SNT funding target, structures the life insurance policy (survivorship whole life or universal life, owned correctly), manages the investment of the SNT corpus, and coordinates benefit planning. DMD-specific: advisor should understand medication cost dynamics and the implications of changing treatment regimens on SNT sizing.
2. Special needs trust attorney: Drafts the third-party SNT with DMD-appropriate distribution language — specifically authorizing medical equipment, respiratory support supplies, ventilator-related home modifications, medication co-pays and gaps, and personal care exceeding Medicaid-funded hours. The distribution standard should give the trustee clear authority to cover medication costs that insurance denies, without requiring lengthy prior-authorization documentation from the trustee.
3. Benefits counselor (CWIC or WIPA): Advises on SSI work incentive optimization for BMD adults who work, coordinates the transition from childhood Medicaid to adult Medicaid at 18, and monitors DAC benefit impact when the parent nears retirement. Available at no cost through Work Incentive Planning and Assistance (WIPA) programs in every state.

Priority actions for DMD families

1. Establish a third-party SNT now, even if the corpus is initially small. The trust structure must exist before assets flow in — and the distribution language should be tailored to DMD's specific cost profile from the start.
2. Get parents insured through a survivorship life insurance assessment to determine how much corpus the SNT needs at both parents' deaths, then size a survivorship policy to meet that target. This should happen before a parent's health event narrows options — and before cardiomyopathy or other conditions in the family affect insurability.
3. Apply for HCBS waiver now, at whatever age your family member with DMD is currently. Waitlists are long. The earlier you apply, the earlier you reach the top of the list when services are needed.
4. Apply for SSI at age 18, even if you don't think you'll qualify — parental deeming ends at 18 and the resource/income test applies to the person with DMD alone. SSI eligibility triggers Medicaid, which is the gateway to medication coverage and HCBS waiver access.
5. Open an ABLE account as early as age 18 (or with an authorized individual if the beneficiary is a minor and your state allows it). Start building a balance that doesn't count toward the $2,000 SSI resource limit and is available for day-to-day disability expenses.
6. Have a first-party SNT framework ready before any lump sum arrives — whether from a personal injury settlement, insurance proceeds, or an inheritance that comes to the person with DMD directly. A d4A trust must be established before those funds are received, not after.

Sources

1. Muscular Dystrophy Association — Duchenne Muscular Dystrophy Overview. DMD affects approximately 1 in 3,500 male births worldwide. One of the most common fatal genetic disorders diagnosed in childhood. X-linked recessive inheritance; females are typically carriers.
2. Circulation (American Heart Association) — Contemporary Cardiac Issues in Duchenne Muscular Dystrophy. As respiratory management has extended life in DMD, dilated cardiomyopathy has become the primary cause of death. Nearly all patients develop cardiomyopathy by adulthood; early signs may appear by age 6–10, with most patients developing cardiomyopathic features between ages 10–15.
3. Muscular Dystrophy News — Emflaza List Price $35,000+ Annually (weight-based scale). Deflazacort (Emflaza) list price starts at approximately $35,000/year for a 25 kg child and scales with patient weight, meaning adult patients face substantially higher list prices. Actual out-of-pocket varies by insurance coverage and assistance programs.
4. PMC / JAMA — Spending on Targeted Therapies for Duchenne Muscular Dystrophy. Annual net sales for DMD exon-skipping therapies reached $879 million in 2022. Eteplirsen (Exondys 51) carries annual list prices ranging from $300,000 to over $1 million, depending on patient weight and dosing. Exon-skipping eligibility depends on confirmed DMD mutation amenable to the specific exon skip.
5. FDA — Expansion of Elevidys (delandistrogene moxeparvovec) Approval for Duchenne Muscular Dystrophy. Initially approved June 22, 2023. Expanded July 2024 to ambulatory patients 4 years and older. In June 2025, FDA revised indication to ambulatory patients 4+ only, removing the non-ambulatory indication following reports of fatal liver failure. Priced at $3.2 million as a one-time infusion.
6. SSA — Substantial Gainful Activity and SSI Benefit Rates 2026. SSI Federal Benefit Rate: $994/month for an eligible individual (2026). SGA: $1,690/month (non-blind). Trial Work Period trigger: $1,210/month. Values indexed annually to CPI.
7. ABLE National Resource Center — 2026 Contribution Limits and ABLE-to-Work. ABLE account annual contribution limit: $20,000 from all sources (2026). Working beneficiaries may contribute an additional amount up to the federal poverty level for a one-person household ($15,650 in 2026) from earned income. Age eligibility expanded to disability onset before age 46 effective January 2026 (ABLE Age Adjustment Act).

Rules verified against 2026 SSA, IRS, FDA, and ABLE standards. SSI FBR $994/month (2026). ABLE age eligibility expanded to 46 (ABLE Age Adjustment Act, effective January 2026). ABLE contribution limit $20,000/year; ABLE-to-Work additional $15,650/year (2026). Elevidys indication and safety status as of June 2025 FDA safety communication. Equipment cost estimates reflect 2025–2026 market rates. HCBS waiver coverage and waitlist times vary significantly by state — confirm with a specialist in your state.