As parents, we all want the best for our children, no matter their age. We envision them living independent, fulfilling lives, even after we’re no longer around. However, for parents of adult children with disabilities, the future can feel especially uncertain. As you navigate your own aging process and plan for retirement, you may also find yourself wondering how your child will fare once you’re no longer able to provide the care and support they need.
Planning for your own future is important, but when your adult child relies on you, those plans often need to consider their needs as well. Whether your child still lives with you or requires ongoing assistance, the complexities of preparing for both your retirement and your child’s independence require thoughtful consideration. Here are some key steps to help you plan for both your future and your child’s.
Start the Conversation Early: Don’t Wait to Plan
It’s easy to put off tough conversations about the future, but Cheryl Caira, a mom from Framingham, Massachusetts, urges parents not to wait until their child turns 22 to ask, “What now?” Her daughter, Jordan, has Down syndrome, and Cheryl shared that they always plan ahead at least a year into the future for Jordan’s needs. “We realized early on that our child doesn’t have to mirror another child’s path,” Cheryl says. By having open, honest conversations about what your child wants for their future, you can start working together to create a plan that reflects both your needs and theirs.
Keep Legal Forms Up-to-Date for Better Communication and Decision-Making
When your child turns 18, your rights as their parent change, especially when it comes to medical decisions. Under the Health Insurance Portability and Accountability Act (HIPAA), you will need explicit consent to access their medical information or speak with doctors. If your adult child has medical, cognitive, or mental health challenges, consider setting up a HIPAA release form to ensure that you can still make informed decisions on their behalf.
As you age, it’s also crucial to plan for the future and determine who will take over these responsibilities if you’re no longer able to do so. Having these forms in place now can make transitions smoother in the long run.
Understand Your Rights: Become Familiar with the Americans with Disabilities Act (ADA)
The Americans with Disabilities Act (ADA) is a key civil rights law that prohibits discrimination against individuals with disabilities. As a parent, it’s important to know the rights available to your child, whether or not they fully understand them. By becoming familiar with the ADA, you can advocate for your child’s needs in education, employment, and beyond.
Prepare for the Unexpected: Address “What If?” Scenarios
Thinking about what happens if you die or become incapacitated is not easy, but it’s a reality parents of children with disabilities often must face. Cheryl confesses that these “morbid thoughts” were hard but necessary. “What happens to my child if I’m no longer here? Who will make sure they get everything they need?” These are valid questions that need clear answers, especially when your child depends on you for care.
To help answer these questions, Cheryl offers the following practical tips to guide you in your planning:
- Document Key Information: Cheryl started a journal about her daughter’s likes, dislikes, routine, passions, quirks, etc. She updates it every year on her daughter’s birthday, so that it may one day be a valuable tool for anyone who might need to step in and support Jordan in the future. “Anyone can read it and understand what our vision for her was,” Cheryl explains.
- Create an Updated Family Medical Sheet: Cheryl advises keeping a simple, one-page medical sheet that lists your child’s medications, vitamins, allergies, and relevant family health history. This sheet can be given to any new doctor or medical professional, saving you time and stress.
- Consider an ABLE Account: The ABLE Act allows individuals with disabilities to open tax-free savings accounts, known as ABLE accounts, to cover essential disability-related expenses, such as housing, education, and transportation. This act is crucial for adults with disabilities, especially those who rely on public benefits like Medicaid. Without an ABLE account or a special needs trust, individuals with disabilities face restrictions on how much money they can save, which can limit their independence and security in the long run.
- Prioritize Estate Planning: Estate planning is always important, but when you have a child with a disability, it’s essential. Consider setting up a special needs trust to ensure your child’s financial needs are met after you’re gone. Cheryl found the process challenging but necessary. “Finding people to fill roles like guardian or trustee was difficult, but with the right lawyer, we managed to put together a solid plan,” she shares.
- Use Existing Services: By the time your child reaches adulthood, you may already be familiar with many services available to them. Cheryl advises using these services rather than reinventing the wheel. “It can be exhausting and time-consuming to create your own services,” she notes. Leverage the resources that are already in place to avoid burnout and maintain continuity of care.
- Research Living Situations Thoroughly: For some families, finding the right living environment for their adult child is a priority. Whether considering group homes, shared living environments, or other options, thorough research is key. Cheryl stresses the importance of understanding the limitations of these services. For example, if your child needs medical care or assistance during off-hours, there can be delays due to case manager availability. It’s essential to ask questions and understand the system before making any decisions.
- Be Prepared for Ongoing Advocacy: Cheryl has learned firsthand that advocating for your child’s needs doesn’t stop when they become adults. As your child’s advocate, you will need to remain involved in their care, ensuring they continue to have the resources, support, and independence they deserve. Keep your communication open with service providers, network with other parents, and continue to stay informed about available options.
Conclusion: Plan Today for a Better Tomorrow
Planning for the future of an adult child with disabilities may seem overwhelming at times, but taking small, actionable steps now can ease the transition later. Starting early, understanding the available legal and financial tools, and advocating for your child’s independence can give both you and your child greater peace of mind as you age and enter the next phase of life.
By preparing for the unexpected and making thoughtful, informed decisions, you can ensure that your child will continue to thrive even after you’re no longer able to provide direct care.
Want more? Check out our blogs, 4 Life Insurance Considerations for Parents of Children With Disabilities and 3 Ways to Support People With Developmental Disabilities.
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