As friends worry out loud about how they'll pay for their kids' college education, the parents of children with special needs have worries that extend beyond the few years it takes to get a college degree:
These questions and fears might stop you in your tracks. But financial planners say that creating a plan can ease anxiety. Some of the issues you need to confront are financial: How do you set aside money for your child without affecting his or her government benefits? And some are emotional: Who would understand your child's needs if something were to happen to you right now?
Here are 10 steps to planning your child's financial future. Some are simple, some are challenging; some cost nothing and some require paying legal fees. Get started on some of these now, so you'll have peace of mind down the road.
A special needs trust is the most important part of your child's long-term financial plan. This is where you can put money that you save, that others give your child as gifts, or that you receive from an insurance settlement without worrying that these funds will 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, 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.
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 special needs, a will should not be a do-it-yourself endeavor. Hire a lawyer who works specifically for people with special needs 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.
Costs for this legal paperwork, including the will, trust, and powers of attorney, start at $1,500 and go higher depending on where you live. Contact the Academy of Special Needs Planners or the Special Needs Alliance for a referral to an attorney in your state.
A guardian is the person who will care for your child if you were to die before he or she becomes an adult. In choosing this person, consider how much time you now spend tending to your child's needs. Who can handle that type of commitment? Who has bonded with your child? Who has the patience, understanding, and other personality traits necessary to deal with the day-to-day responsibilities of raising your child?
Once you pick someone, ask the person if he or she can and will accept that responsibility (even though you hope it will never be necessary). And talk about how this commitment will likely stretch beyond when your child turns 18.
A trustee is the person who will be responsible for managing the special needs trust after your death. It can be a family member, a friend, an independent professional trustee, or even a bank or lawyer. The trustee ensures that the money in the trust is spent only on your child with special needs and only on services that you've specified or that are appropriate to your child's needs. The trustee also supervises how the money in the trust is invested. The person who is caring for your son or daughter (the guardian) cannot spend any money in the trust without the trustee's approval.
And a word on trustees and guardians: They often are not the same person, and some financial advisors recommend that they never be the same person. By separating these roles, you ensure a "checks and balances" system for your child's future needs.
Parents of children with special needs quickly learn that just because a child needs a certain treatment or therapy doesn't mean that your school system will offer it or insurance will cover it. This is where personal savings become so important. Start putting aside whatever you can each month — no amount is too small — to cover these extra expenses. Just make sure you never put this money in your child's name.
Savings also can help pay for a special needs advocate, an expert in special education who can help you navigate the paperwork, programs, and laws that affect what services your child qualifies for. Special needs advocates can save parents money in the long run by using their expertise to ensure that kids get all the services they're entitled to from their local school district.
To find an advocate in your area, ask other parents for recommendations or contact your local school district, organizations focused on your child's disability, or local colleges with special needs programs for a referral.
Preparing for your child's financial future is important. But hand-in-hand with that 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 medications 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.
When your child is about 16, start thinking about where he or she will live as an adult. In most states, people with special needs are 21 or 22 years old when they become ineligible for education services through the local public school system.
So start thinking: Will your child remain living with you? If so, will support personnel be needed during the day when he or she used to be at school? Are day programs for adults with special needs available in your area? If independent living is the goal, start investigating options in your community such as shared living, group homes, or apartments. Once you find a place you like, get on the waiting list if there is one.
Once children turn 18, they're considered adults in the eyes of the law. This gives your child the right to make medical and financial decisions. If he or she is not capable of this or needs your guidance, consider assuming legal guardianship or the less-restrictive power of attorney and health care proxy for his or her financial, legal, and health care affairs. This way you maintain the same supervision and control you had over these as you did when your daughter or son was younger.
Experts advise parents to hire an attorney to help with this process. This will ensure that you have all the powers you would need to assume control of your adult child's health care in the event of an emergency. If your child cannot or won't consent to you assuming power of attorney, the matter will likely be decided before a probate court judge.
Grandparents, aunts, uncles, and other loved ones might want to help out with expenses. But explain to them the importance of not putting anything in your child's name. Have a family meeting and explain why grandpa can't leave anything to your child in his will or name your child beneficiary on his life insurance policy. The same goes for gifts of savings bonds, stocks, or cash: nothing should ever be in your child's name.
And if your son or daughter will not attend college, there is no need for a 529 savings plan. Those funds can only be used for post-secondary education, not private schools, tutoring, or therapies needed before age 18.
If loved ones want to leave something to your child, they can. But tell them to name the special needs trust as the beneficiary to ensure that your child holds no assets of his or her own.
If all of this is too overwhelming, a certified financial planner or special needs financial planner can help. Ask your human resources department if your company offers this service as part of your benefits package. Or check the Academy of Special Needs Planners or Special Needs Alliance websites for a referral to a professional in your area.
Reviewed by: Larissa Hirsch, MD
Date reviewed: September 2015
|Family Voices This website brings together families who have children with special health needs.|
|DisabilityResources.org This website includes resources for people with disabilities.|
|Adolescent Health Transition Project This is a health and transition resource for adolescents with special health care needs, chronic illnesses, and physical or developmental disabilities.|
|Office of Special Education and Rehabilitative Services, U.S. Department of Education This Web site provides information and lists programs dedicated to educating children with special needs.|
|Wrightslaw This site provides information about advocacy for children with disabilities.|
|KidNeeds.com This website is for children with special needs, their parents, and other caregivers and contains information and health supplies.|
|Individuals with Disabilities Education Act The Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation.|
|Special Needs Answers Special Needs Answers offers information to help plan the future of kids with special needs, including a searchable attorney database to find someone who can answer legal questions and assist in planning.|
|The Special Needs Alliance The Special Needs Alliance helps people with disabilities, their families, and the professionals who represent them. Find national and local services and support programs, get answers to questions about finances and disability benefits, or search the attorney database to find help with legal matters.|
|Academy of Special Needs Planners Helping parents and others in planning for their own futures and for those of family members with special needs.|
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