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As a parent of a child with special needs, I know all too well the concerns, struggles, and fears a family can have when faced with this course in their child’s life. And if you're a parent who is nearing retirement or already retired, you may be concerned about how to ensure your child is cared for and financially secure even after you're gone. Families are often led to believe their loved one will lose vital state and federal benefits if money is left to them for their support. But this isn't the case, and there are ways to exempt and preserve assets left to your loved one for their care.
My experience lies in understanding state and federal resources, government benefits and eligibility, and the legal and financial options a family may consider when navigating life for their special-needs child. I'm committed to helping families easily access special needs planning information and feel comfortable seeking help throughout the process.
It's crucial to get reliable information and support when you have a child with special needs. You can begin by talking to:
Each of these people or organizations should be able to point you toward resources in the categories in which your child may need support.
The Americans with Disabilities Act (ADA), as well as federal and state special education laws, require public schools to provide a "free and appropriate public education" for students with special needs. This requires schools to accept and make accommodations for students with disabilities.
To begin, you'll need to have your child evaluated by your local school district to see what special education services or early intervention services he or she may be eligible for.
Special needs can require special health care. Families who are struggling to access medical care may be able to qualify for Medicaid—indeed, in most states, your adult child will automatically qualify for Medicaid if they live in a residential care requirement or meet the income requirements for Supplemental Security Income (SSI). Other state and local organizations may be able to point you toward healthcare resources and other ways to defray the costs of medical treatment.
Many communities offer support programs and services that can help your child gain independence and learn useful life skills like cooking, self-care, laundry, and grocery shopping. These services can also provide assistance in building decision-making skills and coping with stress.
Caregiving is a 24/7/365 job, and even the most devoted caregivers need breaks to avoid burnout. It's important for caregivers to take time for themselves whenever possible.
Contact your state's Department of Social Services or Office for Children to locate child care and respite care programs that can help provide you with additional assistance in caring for your child.
There are several ways to pass down assets to your child and still qualify for SSI or Medicaid income limits.
A special needs trust (or supplemental needs trust) is established to fund the supplemental needs of someone with disabilities—without jeopardizing their eligibility for government benefits.
Some features of a special needs trust include:
A financial professional can help you determine whether a special needs trust is the best option for your unique situation and assist you with the setup process.
Estate planning takes on a new importance when you have a child with special needs. Your will and any other estate planning documents should address the unique concerns and issues you face. These may include:
One of the most common complications that can arise with an improperly-planned estate is allowing assets to pass directly to your special-needs child. Not only can this leave your child vulnerable to scam artists, but any assets in excess of the $2,000 SSI limit can also disqualify your child from Medicaid and SSI. Once the inheritance is gone, it can take time for your child to reapply and begin receiving these benefits again.
Another important part of the planning process involves naming someone to serve as your child's guardian upon your death or incapacitation. Choosing a guardian who can advocate on your child's behalf after you die can be one of the most important decisions you'll ever face. This guardian will need to handle a variety of complex financial, legal, and personal issues on your child's behalf; and if your child is deemed incapacitated after age 18, this guardianship could last the rest of your child's life.
This guardian will have legal power to care for your child and manage their personal and financial affairs. This can include:
However, you don't necessarily need to find one person to perform all of these duties. You can nominate different people to serve as "guardian of the person" (handling medical issues and living arrangements) and another to serve as "guardian of the estate" (handling finances).
If you or your family member would like more information about special needs planning, please call our office at 314-686-4620 or take a look at our Special Needs Planning Guide below for more information about your options.
*This information is not intended as authoritative guidance or legal advice. You should consult with your attorney for guidance on your specific situation.