Planning for the Future of an Adult Child with Disabilities
More adults with disabilities are living longer, which makes future planning critical for parents. Creating a plan is an ongoing process that adapts as your child’s needs change.
The Journal of the American Medical Association reports that life expectancy for adults with Down syndrome jumped from 25 years in 1983 to 60 years in 2020. Many people with cerebral palsy now live into their 50s. These longer lifespans mean parents must plan for both short-term and long-term needs.
A strong plan covers five key elements:
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Vision
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Living Accommodations
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Government Resources
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Private Financial Resources
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Legal Needs
1. Create a Vision
Decide what you want your child’s life to look like after you are gone. Involve your child as much as possible. Focus on their abilities and strengths to build independence and confidence.
Write a Letter of Intent (LOI):
Record your child’s daily routines, medical information, caregivers, and trusted contacts. This document guides future caregivers and ensures continuity. Update it every two years or after major changes.
Build a Support Team:
Choose family, friends, and professionals who will help your child make decisions and live successfully. The National Resource Center for Supported Decision-Making provides state-specific guidance.
2. Choose Living Arrangements Early
Plan where your child will live before a crisis forces change. Moving your child while you are alive can make the transition easier.
Housing Options:
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Leave your home in a special needs trust with funds to cover taxes and maintenance.
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Buy a condo or townhouse and place it in a trust.
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Apply for Section 8 vouchers to secure affordable housing, keeping in mind that waitlists can be long.
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Explore group homes funded privately or through Medicaid that provide staff support for daily living.
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Work with a special needs attorney if assisted living becomes necessary.
3. Maximize Government Benefits
List all programs and providers that support your child. Apply for Supplemental Security Income (SSI) to guarantee monthly income.
Meet Medicaid’s income and asset limits to qualify for comprehensive health coverage. Assign a reliable representative payee or trustee to manage benefits and keep your child eligible.
Parents of disabled veterans should apply for Veterans Disability Compensation or Veterans Disability Pension to supplement income.
4. Build Private Financial Resources
Create a detailed financial plan with a special needs attorney. Include:
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Life Insurance for ongoing support
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ABLE Accounts to save tax-free for disability-related expenses
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Special Needs Trusts
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Third-Party Trusts funded by family
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First-Party Trusts funded with the child’s assets
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Pooled Trusts managed by nonprofits
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These tools keep your child financially supported without risking benefit eligibility.
5. Put Legal Protections in Place
Use legal tools to safeguard your child’s future. Consider:
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Guardianship or Conservatorship
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Advance Health Care Directive
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Durable Power of Attorney
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Special Needs Trust
Take Action Now
Plan proactively rather than reactively. Speak with a special needs attorney to design a strategy that protects your child’s future and preserves government benefits.
Start today to secure your child’s future and peace of mind. Call us at (207) 848-5600 or visit our CONTACT page to schedule a consultation.
