Special Needs & Disabilities Planning
As friends worry out loud about how they will pay for their kid’s college education, the parents of children with special needs have worries that extend beyond the few years it takes to get a college degree:
- How will we pay for the special therapies our child needs now?
- Who will pay our child’s expenses once he or she becomes an adult?
- Where will our child live and who will oversee his or her care ager we’re gone?
These questions and fears might stop you in your tracks. But attorneys experienced with special needs planning say that creating a plan can ease anxiety. Some of the issues you need to confront have financial and legal implications: 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 some important steps to planning your child’s future. Some are simple, some are challenging. Get started on some of these now so you’ll have peace of mind down the road.
Create A Special Needs Trust
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, it is advisable to go ahead and set one up. 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 $3,000 in assets could make your child ineligible for federal benefits such as SSI.Grandparents, aunts, uncles, and other loved ones might want to help out with expenses. 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 of his life insurance policy. The same goes for gifts of savings bonds, stocks or cash; nothing should ever be in your child’s name. If loved ones want to leave something to your child, they can. When we create the special needs trust, we would name the trust as the beneficiary to ensure that your child holds no assets of his or her own.
Write A Will
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. The will is also where you can specify a guardian who will take care of your child. Our law firm has worked with a number of special needs cases and is aware of the state’s disability laws. Once we draft the documents for you, you may want us to keep a copy and then you would also want to provide copies to any executors or guardians named in the will.
Name A Guardian
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.
Name A Trustee
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.
Build Your Savings
Parents of children with special needs quickly learn that just because a child needs a certain treatment or therapy, that 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. We are happy to help clients find an advocate for their children.
Write a Letter of Intent
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. That same advice 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, therapist and other medical support professionals. Of course, always keep a list of current medications and their dosages and schedules. If there are people you don’t want around your child or activities to be avoided, write that down as well. Review and update the letter on an annual basis. This is not a legal document so you can draft it yourself. Keep a copy wherever you keep copies of your will. And make sure that your child’s appointed guardian has a copy as well.
Apply for Guardianship or Power of Attorney
Once children turn 18, they are considered adults in the eyes of the law. This gives your child the right to make medical and financial decision. 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 have over these as you did when your daughter or son was younger. We can 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 your assuming power of attorney, the matter will likely be decided before a probate court judge.
Planning ahead saves a lot of stress and anxiety on parents, family members and others involved with children who have special needs and disabilities. Beck Estate Planning & Elder Law is here to help you navigate the process so that you are in the best position to safeguard your child’s health and wellbeing, maximizing his or her quality of life.
Adapted from Kidshealth.org