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| The Basics | How to provide for a disabled child
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Raising kids with disabilities can be financially challenging, says the writer, a financial planner and parent. Fortunately, there's government help available.
By Randy Neumann
She discovered with great delight that one does not love ones children just because they are ones children, but because of the friendship formed while raising them.
--Gabriel Garcia Marquez
More than 5 million American children between the ages of 3 and 21 suffer from serious disabilities -- from learning disorders to debilitating diseases.
But talk to the parents of most of these kids and its not their disabilities that they worry about so much, if theyre not life threatening. Kids have an amazing capacity to cope, and treatments are constantly improving.
What often troubles parents even more is whether they can afford to pay for the special needs of their kids, and how they can provide for their kids needs when they themselves are no longer around.
Financial planning for a kid with disabilities is especially tricky, not only because of the childs unusual needs -- he or she may never be self-sufficient, for example -- but also because of Uncle Sam. The tax code was not written with their needs in mind. And public programs aimed at helping kids can sometimes backfire on them and their parents.
The politically correct say special or exceptional
If you have a child or grandchild who is physically or mentally limited (the P.C. term is special, or exceptional), youll have to heed a different set of financial rules if youre going to provide the best you can for the youngster.
Take a simple thing like funding the childs college education, for example. For the ordinary child, the parents or grandparents might want to put money aside in a trust. Laws such as the Uniform Gift to Minors Act or the Uniform Transfer to Minors Act encourage such gifts.
The main advantage of these trusts is that the income produced belongs to the child, and is taxed at the childs (usually lower) tax rate. But the law stipulates that the income cannot be used for the childs support. It also stipulates the assets in the trust must become the childs at age 18 or 21, depending on the state.
But for the child with disabilities, income from the trust might be needed for support. Whats more, the young man or woman might not be able to manage his or her financial affairs at 18 or 21.
Frank L. Brunetti, an attorney in Hackensack, N.J., warns of another problem with trusts: If the child could qualify for government programs, the assets in the trust might disqualify him from receiving benefits.
Brunetti also notes that if the child has been receiving benefits from government programs, the money in trusts could now be considered fair game for the government. So, if you have a child who has a handicap that could qualify him for government aid, do not fund trusts for them, he advises.
There is plenty of help available
Dont be shy about seeking government help. There is a lot available for children like yours. Start with your local school system. Federal laws mandate programs to meet the educational needs of kids with disabilities. Its the school districts responsibility to identify individuals with such needs. If you are new to the school district, or have a child younger than school age, you should initiate a meeting.
This was the case with my youngest son, Ryan Charles Parker. At 3 years old, he had a vocabulary of six words, well below the norm. We advised our school district of his problem, and school specialists set up an Individual Education Plan, or IEP. A child study team creates an IEP. The team usually consists of a learning disabilities teacher, a psychologist, a nurse and one or both parents. If necessary, other players are added. (For more information on IEPs, check out the British Columbia Ministry of Education, Skills and Trainings Special Education site.)
The team performs a multi-disciplinary evaluation. The objective of the IEP is to develop a program that meets the childs educational needs. What if the system doesnt have a program that meets your childs individual needs?
According to John Campion, director of special programs in Ridgewood, N.J., They cant say no because they dont have it. If thats the case, they must create it. Failing that, the district will transfer the child to a school system that does have it.
Social Security isnt just for seniors
The big daddy of government benefits is the Social Security Administrations Supplemental Security Income Program. For 2005, it pays $579 per month (supplemented by some states) to someone who has a qualifying disability.
What conditions qualify? The Social Security Web site has a "listing of impairments" which includes common physical and mental conditions, such as attention deficit hyperactivity disorder, cerebral palsy, sickle cell anemia, spina bifida, mental retardation, autism, eating disorders, anxiety disorders, schizophrenia and many other conditions severe enough to disable a child or adolescent.
But the Social Security Administration recently tightened its rules. Specifically, recipients with emotional or behavioral problems or mental retardation may no longer be eligible. For more information, try the Bazelon Center for Mental Health Law, a nonprofit legal advocacy organization.
Life after school
OK, you got your child through school and shes reached the age of majority (18 or 21 years). What now? Well, things are a lot better than they used to be. There was a time when these young adults were hidden in a closet. Now many live on their own or in group homes, and start careers. Some work in sheltered workshops.
After the age of majority, while we may consider them our children, the law does not. Legally, they do not have to listen to our advice or prodding or even anything we say.
Sometimes, however, these young adults cannot fend for themselves in the financial world. They can become involved in transactions that arent in their best interests, yet can be held legally accountable because they are legally adults. In these cases a parent or other family member or friend must petition the court to become a guardian or legal protector.
Just because you are the parent doesn't mean you are automatically named as guardian. You, like anyone else, must go through the legal system. The process is time-consuming and expensive. You have to pay court costs and attorneys fees for both the incompetent (the child) and the guardian (you), as well as physicians fees for affidavits. It often makes sense to name co-guardians so if one dies or cannot continue for any reason, you have a backup without going through the process all over again.
When you are no longer around
The final area of planning to be considered is trust and estate planning, which requires some artistry. Heres why.
In routine trust and estate planning, wills and trusts generally specify what is to be paid to whom and when. Planning for people with disabilities is very different because if you use standard wills and trusts, the money can easily fall prey to the government and other creditors.
Normally, a trust document will pay out money to the beneficiary(s) for such needs as health, maintenance and support. If you do this with a person with disabilities, the government can say, Hey, you use up your trust money before I contribute anything.
The government can also say, Ive been paying benefits to this person for many years. That person now has some money. I will take it as repayment for past benefits, X amount of dollars now, and will require the trustee to pay out Y in the future.
Special trusts for special kids
There is a way around this problem. Its called a special needs trust and many lawyers dont know about it. (If yours doesnt, get another attorney).
The difference between a traditional trust and a special needs trust is what the money pays for.
In the traditional trust, the trustee is instructed to pay for things like health, maintenance and support. But if this language is in a trust and the beneficiary is disabled and receiving other government benefits, the government can compel the trustee to pay for health, maintenance and support.
A special needs trust should not instruct the trustee to pay for basics like health, maintenance and support. The trust can pay for vacations, traveling companions, additional therapies or medical procedures, an advocate, etc.
The special needs trust is the only estate planning document that enables parents to provide the extras for the special needs child, after they have gone.
You can get a lot of information about these trusts on the Web -- from financial institutions, law firms and others. Try, for example, the National Special Needs Network. There are also sites listing publications and videotapes that deal with issues related to disabilities and self -advocacy.
Finally, be sure to talk to your team. Someone is going to be the guardian and someone is going to be the trustee for the child when youre gone. Talk to them so they know what you want them to do. In addition to your will, which is a stilted legal document, write letters to those whom you care for, or need to instruct. Do it now; tomorrow might be too late.
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