Parents with special needs children know how expensive it is
to raise their child. They know what
care they can get, what financial aid they can get and what funded therapies
and courses their children are entitled to. In short, they know the day to day costs of living with a child who has
special needs.
But what about after the parents die? What then? The child will still need day to day care but who will provide it? Who will pay for it? And who will make the important decisions
regarding the child’s healthcare?
There are many fears and stresses surrounding parents in
this situation and it can seem daunting but if you prepare now then it leaves
more time to enjoy the time you do have with your children.
Below are 10 ideas to help plan for the future for a special
needs child.
Set up a Special Needs Trust Fund
Supplemental Security Income (or SSI) is a monthly stipend
that is available to children with special needs and Medicaid offers health
insurance, however, to qualify for these benefits, the applicant (i.e, your
child) must not have any assets worth more than $2,000 in their own name.
But, when you die, all of your estate and assets will be
passed on to your children. Chances are
that this will push them over the threshold and make the ineligible for SSI or
Medicaid. This is where a Special Needs
trust comes in. By setting up the trust,
all monies and assets can safely be put into the trust and not into your child’s
name. Meaning that your child will still
benefit, but it won’t disqualify them for any benefits.
Talk to family members and friends
Family members may want to help with healthcare and
educational costs of your children. But
it is important for them to understand that nothing must be put in your child’s
name.They cannot name your child as a
beneficiary in their will or open savings bonds in your child’s name.Like wise, gifts of cash, checks or stocks
must not be held in your child’s name as this will push them over the threshold
for financial help.
If friends or family members wish to help financially, then
ask them to name the special needs trust as the beneficiary in any wills and
pay any cash gifts straight into the trust.
On a side note, the 529 college savings plan is usually not
necessary for a child with special needs as this can only be used for education
post secondary school and does not cover private tutors, therapies or private
education needed before the age of 18.
Appoint yourself a Guardian, Health Care Proxy or Power of Attorney
Within the United States, once your child reaches the age of
18 they are legally regarded as an adult in the eyes of the law and will
therefore have the same rights as any adult, unless you step in. If you feel that your child’s needs are such
that they cannot make important life
decisions regarding finances or health care for themselves, then you need to
apply to become your child’s legal guardian.
You can also petition the court to become your child’s legal guardian if
you so wish. If you are happier to
designate another adult to be the child’s guardian then you can do so.
In fact, giving another trusted adult legal guardianship of
your child will give you peace of mind, knowing that, in the event of your
death there will be someone on hand to tend to your child’s needs.
Before you appoint a guardian, speak to the person that you
have chosen and make sure that they understand the levels of commitment and
care they would need to be responsible for.
If you do not wish to be a legal guardian, nor have power of
attorney over your child’s affairs as perhaps your child would be able to make
decisions but would perhaps need some guidance, you can appoint yourself or
another adult to be a health care proxy instead.
Should your child object to a named guardian or is not in a
position to agree to having a legal guardian, then the matter will most likely
be decided by a probate court judge.
Write a Will
Again, this goes back to setting up a special needs
trust. Make sure that all of your assets
and estate goes to the special needs trust as without a will, a probate judge
will name your child as the beneficiary and push your child over the threshold
for Supplementary Security Income and Medicaid.
If you need help it might be advisable to approach a law professional.
You can also name the guardian you have chosen for your
child in your will.
As making a will to include a special needs child is not
something that can be done in an off the shelf will writing kit, it would be
advisable to hire a lawyer who specializes in people with special needs and who
would be familiar with your state’s laws surrounding people with disabilities.
Once you have your will finalized, give a copy to your
lawyer and then distribute copies to any guardians you have named within your
will.
Name a Trustee
The trustee will be the person who is in charge of the
special needs trust once you are gone. This could be a bank, an attorney, a judge, a family member or an
individual you trust.
The trustee will be responsible for making sure that the
money from the trust is spent exclusively on your child’s needs and any
services, therapies or educational programs that you have specified or that
become necessary for the care of your child.
It is important to note that your child’s legal guardian cannot spend
any of the money held within the trust with out the permission of the trustee,
thus making sure that the money is appropriately spent and will not be wasted
on things that may not be appropriate or necessary for your child’s needs.
It is advisable though not to use the same person as you
have named as legal guardian as this will ensure that everything is checked and
that all finances are handled fairly.
Plan for your child’s independence
At the age of 21, 22 and even 26 in some states, education
stops for children with special needs in the United States and you will need to
decide what is to happen after this. Do
you want your child to still live with you at home? Is it possible for your child to go into
independent or shared living? If this is
the path you want to take, then you need to start looking at homes and house
shares. Investigating different
companies and looking at what each benefits package has to offer. Also, it is a good idea to apply to any
waiting lists early to avoid disappointment should you find a placement that is
perfect for your child.
Compile a Letter of Intent
Although this is not a legally binding document, it is
helpful for you to outline your wishes for your child if anything should happen
to you. This is your chance to be
specific. If your child has a set
routine that you would like continued then write it down in detail. If there are special dietary needs, or
methods and educational needs that work well for your child, include them in
your letter.
Include in your letter and medical support your child has or
doctors and medical professionals your child is familiar with and also any
medication they take and their schedules and dosages.
Once you have written everything down, make sure that you
keep a copy, put a copy with your will and give a copy to any trustees or
guardians you have appointed and make sure that the letter stays current by
revising and updating it either every year or whenever any new medication is
started or a new program is put into place for example.
As this is not a legal document, then it does not need to be
seen or held by an attorney and you can change it as often as you want. It will also cost nothing to compile and
doesn’t need to be advised upon my a legal professional.
If you feel you need help, then get some!
There are many firms that offer financial planning for
special needs children. To find one, ask
the human resources department of the company that give advise you on your
benefits package as they may offer this service. Other areas you can try are the Special NeedsAlliance or the Academy of Special Needs for a referral to a professional
special needs financial planner in your area.
A special needs advocate is also someone who will help you
through some of the red tape and loop holes, file paperwork and generally
support you through applying for help.
To get in touch with an advocate try approaching schools and colleges
that offer special needs programs and ask if they can put you in contact with
an advocate.
Create a contingency savings plan
It is always a good idea to have some put aside in case an
emergency should arise. By saving up as
much as you can as often as you can, you are safeguarding against any future
financial problems. It doesn’t matter if
you are not in a position to save much each month, as even little amounts will
soon mount up.
Other help available
Look into other help that may be available for your
child. Look up your local social
security office website and see if there are any benefits that you are entitled
to that your child does not yet receive.
The United Healthcare Children’s Foundation do offer grants
for eligible families. It is always a
good idea to check with them to see if there is a grant available for your
child. It may be an idea to supplement
any medical insurance for special educational or medical therapies your child
may need with grant money supplied by the United Healthcare Children’s
Foundation.
It is also worth looking into opening an ABLE account for
your child. This is not taken into
account when assessing the $2,000 threshold for Supplemental Security Income or
Medicaid and is a tax free growth fund
to help with housing costs, medical treatment, legal fees or educational
costs. Be aware though that there is a
maximum annual contribution limit of $14,000 of tax free savings to this
account.
Help can also come in the form of a medical professional
such as your family doctor who may be able to help to navigate the mine field
of medical costs. Also, social workers
will help you to plan for your child’s future and will lobby on your behalf.
It is also a legal requirement for all schools to offer a
free and appropriate educational pathway for children with special needs until
they graduate under the Individuals With Disabilities Education Act
(IDEA). In addition to this, the schools
must fund private services if it is not able to meet your child’s educational
needs. [email protected] is a program that
informs parents of children with special needs of any educational benefits that
are available to them through their child’s school.
IDEA also has a program in place for children with special
needs starting at the age of 14 and states that the school must provide cross
over benefits to help parents of children with special needs to understand the
options for their child once they have left high school. To find out more about these benefits, speak
to your child’s school’s resource coordinator and discuss with them what you
would like to happen once you’r child leaves school.
Another useful resource for finding programs and support is
thearc.org. Your local Arc chapter will
help you to learn what educational and therapy benefits there might be in your
local area to help support your child after they leave school.
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