As many parents know, the needs of children with disabilities evolve significantly over time. For this reason, building an estate plan that includes long-term care of an adult child with a disability requires a flexible and proactive approach. Additionally, the life expectancy for many adults with disabilities has increased over the years.
For instance, research shows that the life expectancy of adults with Down syndrome grew from 25 years in 1983 to around 60 years by 2020. Likewise, those with cerebral palsy—the most common motor disability among children in the United States—often live well into their 50s. These improving life expectancies highlight the need for thorough special needs planning, incorporating both immediate and long-term considerations.
Below are a few important components to help you establish a strong support system for your adult child:
- Vision for the Future
- Housing and Living Arrangements
- Access to Government Resources
- Private Financial Resources
- Legal Planning with Special Needs Attorneys
A Vision for the Future
Envision the ideal life for your adult child once you’re no longer there to support them. Establishing a clear vision is essential, and involving your child in this process is invaluable. Focus on their strengths and capabilities, not just the challenges associated with their disability. By including them in the planning, you also support their self-esteem and independence to the fullest extent.
Creating a Letter of Intent (LOI)
While not legally binding, a Letter of Intent (LOI) is vital for sharing key details about your child’s daily routines, preferences, and long-term wishes. This document should be thorough, covering essential medical information and identifying caregivers, providers, and other supportive individuals in your child’s life. It’s wise to review and update the LOI at least every two years or whenever significant changes occur, ensuring it remains accurate.
Supported Decision-Making
If your adult child is able to make decisions independently, building a team of trusted advisors is still beneficial. This support team may consist of family members, professionals, friends, or local community resources that contribute to your child’s well-being. The National Resource Center for Supported Decision-Making offers resources and state-by-state information about the right to make choices and the options available.
Finding a Suitable Housing Option
Finding the right housing option for your child is a key step in ensuring their independence, security, and quality of life. Housing choices vary widely, from living with a family member to group homes and federally funded programs. Through careful planning with the help of legal and financial advisors, you can create a stable and supportive environment that meets your child’s needs for the long term.
Here are a few housing options available to adults with disabilities:
– Your Current Home: If you plan to leave your home to your child, consider placing your home in a special needs trust. Make sure the trust includes enough funds to cover ongoing expenses, such as maintenance, taxes, and utilities.
– A Separate Residence: You might consider purchasing a condo or townhouse for your child. This could be also be included in a special needs trust, ensuring the property is secure and funded for the future.
– Section 8 Housing Vouchers: This federal program provides affordable housing options for low-income individuals with disabilities. However, application and waitlisting make this a potentially lengthy process.
– Group Homes: Adults with disabilities have the ability to use private funds or Medicaid benefits for group home living. These settings often include support from counselors or staff, enabling residents to live as independently as possible.
– Assisted Living: If your child requires assisted living, a special needs attorney can help you explore the best options suited to their needs and circumstances.
Government Resources Available
Understanding the government resources available to your adult child is a critical component of their long-term support system. Programs such as Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid, and state-specific services provide financial assistance, healthcare, and assistance to enhance your child’s independence and quality of life. These programs are often the backbone of support for adults with disabilities, helping to cover everyday needs, medical costs, and community living expenses.
Public Assistance Programs
Navigating public assistance programs is often complex. Therefore, consulting with a special needs attorney is highly recommended. An attorney helps to guide you in managing assets to ensure your child remains eligible for essential government benefits. One key resource is Supplemental Security Income (SSI), which provides a minimum income for low-income individuals with disabilities. For those who cannot handle their finances, a representative payee can manage the SSI benefits, ensuring they are used appropriately.
Medicaid is another critical program, covering a broad range of healthcare services for those with limited income and assets. Eligibility requires careful asset management, with only specific types of assets protected, such as those in ABLE accounts or Special Needs Trusts. Establishing legal structures to enable a trusted individual to manage your child’s Medicaid and SSI benefits is essential for maintaining access to these resources.
Additional programs exist for specific populations, such as Veterans Disability Compensation for veterans with disabilities and the Veterans Disability Pension, a needs-based program with income and asset limits. Veterans with disabilities benefit from special needs trusts, which help protect assets while preserving access to these programs. Finally, various other federal protections and programs, including the Americans with Disabilities Act (ADA), the Affordable Care Act (ACA), and the Ticket to Work Program, offer additional support and anti-discrimination protections for adults with disabilities.
Private Financial Resources
Establishing a solid financial plan for your child’s future is essential to their long-term safety and success. Start by consulting a special needs planning attorney to develop a framework tailored to your family’s needs. Once the structure is in place, then begin working on implementing specific financial resources and funding options that will ensure stability for your child.
Life insurance policies and other investment strategies are valuable tools for securing your child’s financial future. An Achieving a Better Life Experience (ABLE) account is one such option, allowing you to save funds for your child’s needs without jeopardizing their eligibility for government benefits.
Another key financial vehicle is a special needs trust, which provides additional funds while preserving access to essential public assistance programs. Special needs trusts come in several forms, including Third-Party Special or Supplemental Needs Trusts (SNT), First-Party or Self-Settled SNTs, and Pooled Special Needs Trusts. Each type serves different financial situations and can be customized to meet your child’s unique requirements.
Building an Estate Plan with Legal Assistance
Essential Legal Tools for Planning the Future of Adults with Disabilities
Parents have several legal tools available to create a secure, lifelong plan for an adult child with disabilities. These options include:
- Guardianship: Allows parents or designated individuals to make personal and financial decisions on behalf of the child.
- Conservatorship: Provides legal authority over financial matters if the child cannot manage their finances independently.
- Special Needs Trusts: Protects financial resources without impacting eligibility for government benefits.
- Advance Health Care Directive: Outlines medical preferences and appoints someone to make healthcare decisions.
- Durable Power of Attorney: Authorizes a trusted person to manage legal and financial affairs.
Working with an attorney experienced in disability law is essential to choose the right tools for your child’s needs. Expert legal guidance prevents actions that may unintentionally disqualify your child from crucial government assistance. To ensure their future stability, consult a local special needs attorney and start building a well-informed plan.
Bromlow Law, PLLC and Laura L. Bromlow, are dedicated to the practice of Elder Law and Estate Planning. Our practice focuses solely on working with clients in these and closely related legal fields. Laura L. Bromlow is a Certified Elder Law Attorney with the National Elder Law Foundation. Bromlow Law, PLLC strives to enhance communication among family members and loved ones and to keep them all out of conflict so they can stay out of court. We want to help you keep your close circle safe!
Please contact our office today at (281) 665-3807 to schedule a free consultation to discuss your legal matters. We look forward to the opportunity to work with you.