What is Disability? What are Disability Services? 

Disability is broadly defined as any condition that makes it more difficult for a person to do certain activities or interact with the world around them. Disability services are programs and supports that help individuals with disabling conditions navigate life, including:  

• Genetic and disability rights 

• Accommodations and employment rights 

• Health, life, and disability insurance 

• Legal and financial planning 

Key point: Disability is not just a financial benefit—it’s a way of life that requires planning and support.  

Disability Planning: Timeline & Stages 

• Planning Stage: Early research and preparation (ideally before diagnosis or in early stages). Includes understanding benefits, insurance, and financial options. 

• Action Stage: When the condition impacts daily life (e.g., stopping work, applying for benefits, executing legal documents). 

• Benefit Stage: Using established benefits and plans for care and support. 

Tip: There is no perfect timeline. Start as early as possible, but it’s never too late to begin planning.  

Why Start Planning Early? 

• Government benefits may cover some needs, but not all. 

• Consider medical treatment, employment, education, skill development, travel, and social needs. 

• Planning is not “one size fits all”—take small steps and adjust as life changes. 

Government Benefits 

• Entitlement benefits (e.g., Social Security Disability, Social Security Retirement, Medicare) 

• Public assistance (e.g., SSI, Medicaid, food stamps-SNAP, Temporary Assistance for Needy Families – TANF) 

• Eligibility changes at age 18 (benefits are based on the individual, not the family) 

• Resource limits: Individuals should not have more than $2,000 in their name (outside of a trust or ABLE account) 

• Special programs: Childhood Disability Benefit (DAC), age 18 redetermination, etc. 

Tip: Always double-check information from Social Security and ask for a supervisor if needed.  

Legal Structures for Planning 

• Special Needs Trusts (First-party, Third-party, Self-settled, Pooled) 

• ABLE Accounts 

• Guardianship (full or partial), Powers of Attorney, Trustees, Estate Planning, Letter of Intent 

• Work with attorneys and professionals who specialize in disability and special needs planning 

Tip: Employer-provided insurance (health, life, disability) is often easier to obtain and may not require health questions.  

Financial Tools & Accounts 

• 401(k), IRA, HSA, high-yield savings accounts, money market accounts 

• Special Needs Trusts: Protect assets and maintain eligibility for government benefits 

• ABLE Accounts: Save up to $19,000/year (limits vary by state), pay for qualified disability expenses, some states have no Medicaid payback provision 

• Work with financial planners who have the CHSNC (Chartered Special Needs Consultant) designation 

Tip: Not all attorneys or financial planners are familiar with special needs planning—choose specialists!  

Medicaid & Long-Term Care 

• Medicaid is essential for long-term care, in-home health aides, and many medical expenses 

• Medicare does not cover long-term care, vision, or dental (without extra coverage) 

• Financial planning helps maintain eligibility for Medicaid and other benefits 

Guardianship & Alternatives 

• Guardianship removes rights—consider alternatives like durable power of attorney, healthcare power of attorney, and supported decision-making 

• Guardianship can be costly and complex; alternatives empower the individual 

Sharing Information with Future Caregivers 

Letter of Intent: A non-legally binding document that shares hopes, wishes, medical history, preferences, and important information for future caregivers. Keep it with vital documents.  

Where to Find Help 

• Financial advisors with CHSNC designation 

• Special Needs Alliance, Academy for Special Needs Planners, National Elder Law Association (NELA) 

• CPAs with special needs training 

• Nonprofits and advocacy organizations (e.g., HDSA, NAF, Mass Mutual SpecialCare) 

Note: “Disability attorneys” as a specialty do not exist—look for elder law or special needs trust attorneys with relevant experience. Also remember, attorneys specialize in areas of law, not disease. You do not need an attorney that is well-versed in your disease, instead look for someone who understands the complexities of chronic/disabling health conditions, who listens and learns, and who makes you feel comfortable.  

Final Thoughts 

Planning for disability and financial needs can be overwhelming, but you don’t have to do it alone. Take small steps, seek out specialists, and use available resources. Reach out to the organizations and professionals mentioned for guidance and support.  

Resources