As a parent of a child with special needs, it’s common to have concerns about your child’s future. You want to ensure your child lives a quality life after you’re gone. If your child can’t work, you also want to make sure his or her expenses are covered. And lastly, you want to find out how to do all this without affecting any government benefits your child receives. That’s’ why creating a financial plan for your child with special needs is so important.
Get started on creating a financial plan now, so you'll have peace of mind down the road.
If your child is not completely independent, filing for a conservatorship is an important step to take. Under state and federal law, once a child reaches the age of 18, he or she is considered a legal adult and you will no longer be able to make decisions regarding finances, health care, or education on his or her behalf. If granted, a conservatorship would allow you to continue making these decisions.
A conservatorship is established in court when a judge appoints a responsible person (a conservator) to care for another adult (a conservatee). This process necessitates the completion of court-ordered paperwork, local center intervention, a court-ordered investigator, as well as a court hearing.
The court will outline the powers and duties given to the conservator and those powers and duties will be only those necessary to provide for the demonstrated need of the person with a disability.
A special needs trust is an important part of your child's long-term financial plan. This is where you can put money that you save, that others give to your child as gifts, and that you receive from any insurance settlements. This trust is secure and won’t interfere with your child's eligibility for federal benefits like Medicaid and Supplemental Security Income (SSI).
Even if you're unable to pay into a trust right now, you can set one up anyway. This way, you can make the trust the beneficiary of your life insurance policy and your estate, ensuring that those assets don't get passed to your child when you die. Why wouldn't you want your child to be the beneficiary of your estate? Because showing more than $2,000 in assets could make your child ineligible for federal benefits such as SSI.
Another option for planning for your child’s financial future is to establish an ABLE account. The Achieving a Better Life Experience (ABLE) Act of 2014 allows states to create a tax-advantaged savings program for people with disabilities to pay for qualified disability expenses tax-free. With an ABLE account, you can save up to $15,000 a year for your child, and the money grows in the account tax-free.
A will specifies what will be done with your assets after your death. By writing a will, you make sure that your assets are left to the special needs trust and not to your child. Without a will, a probate court judge could name your child as a beneficiary, which could make your child ineligible for federal benefits (see above). The will is also where you can specify a guardian who will take care of your child.
When you have a child with a disability, a will should not be a do-it-yourself endeavor. Hire a lawyer who works specifically for people with disabilities and is aware of your state's disability laws. Once the documents are drafted, have your lawyer keep one and then give copies to any executors or guardians named in the will. Contact the Academy of Special Needs Planners or the Special Needs Alliance for a referral to an attorney in your state.
Preparing for your child's financial future is important. But so is making sure that your child's everyday needs will be met should anything happen to you. That's where a Letter of Intent comes in. Is your child's daily routine very important? Write it down and be as detailed as possible. The same goes for your child's daily, weekly, and monthly schedules. Also include things that your child likes and dislikes, and helpful resources in the community.
Create a list of contact information for your child's physicians, therapists, and other medical support people as well as current medicines and their dosages and schedules. Are there people you don't want around your child or activities to be avoided? Write that down too.
And then once a year, update the letter. This is not a formal legal document, so you can draft it yourself. Keep a copy wherever you have copies of your will. And make sure that your child's appointed guardian has a copy too.
If you feel overwhelmed and you need help, please contact us.
American Advocacy Group is on the front lines every day, making positive change happen for people diagnosed with Autism, Down syndrome and a range of diagnoses across the continuum. As a leading advocate for all people with intellectual and developmental disabilities and their families, and the premier provider of the support and services people want and need, we understand the system and know how to take action in regard to your best interests.
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