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Q: My daughter with SMA (spinal muscular atrophy) is 17
and I've been told I should have applied for government benefits
for her. Is this true, and if so how do I do this?
you should be getting ready to apply for benefits. Whether
she is qualified may depend upon YOUR own assets and income and
your daughter's assets and income. In many cases, she will not qualify
until age 18. This is because before she is 18 your assets and income
will count; and at age 18 only HERS will be considered on the application.
If your daughter is considered disabled by
Social Security rules, then she should be eligible for SSI and Medicaid.
However, there are asset and income limitations. To qualify for
the maximum SSI benefit, your daughter cannot have current assets
greater than $2,000 or income greater than $85 a month.
Q: I know that setting up some kind of trust for our child
with a disability is critical, but how soon does this need to be
up the trust is critical NOW, not later. Some day you may not be
here and you will still want to provide for your son through an
inheritance. How do you do this when he can't have more than $2000
in his name or he will lose benefits? A discretionary Special Needs
Trust is the document you use and you can leave money in your will
to be directed to this trust. A special needs planner can direct
you to qualified attorneys who are knowledgeable about these trusts
in your state. None of us knows how long we will live so be sure
your will and the trust are prepared as soon as possible to protect
the future of your child with a disability.
Q: We have a child with a disability and know that she cannot
have more than $2000 in her name. We have put money aside for her
in our other child's name, but don't know if this is the right thing
to do. Would it be better to leave it with an aunt or uncle?
you are alive and in control of the money, either might work. But
if something happens to you there are great risks involved. A sibling
or aunt and uncle might have the best of intentions, but what if
they had IRS problems or if one of them was to be sued? Or what
if there was a divorce? The money intended for your child with a
disability would be at risk. That is why we use a Special Needs
Trust instead of leaving money to siblings or other family members.
Q: We have a child with a disability and have been told he
should get SSI assistance. What is SSI and why should he receive
is supplemental security income. It is government entitlement for
those with a disability who have not paid into Social Security.
The definition of disability must be met first and then secondly
the individual's assets must be below a certain level. If your child
is under the age of 18, mom and dad's assets and income will count
in the calculations. If your child with the disability is 18 or
older only their assets and income will count.
This is an important benefit for your child
if you anticipate that he/she will not be able to provide for his/her
own financial future. This will be the base of their support, upon
which you can help them build some financial security.
Q: We have been told our daughter with a disability should
be placed in a residential facility because she is a danger to our
other children. We are devastated but need to do something. Where
do we begin?
understand that this is very difficult for your family. If you have
researched all of the possibilities for help, and still feel that
your child presents a danger to your other children, you should
contact the local case management coordinator for your area. They
will help you assess appropriate placement and explain the options
that might be available to your family.
Q: I have recently received a liver transplant and have very
expensive medications. Is there any way to get help with paying
you do not have medical insurance which covers these expenses you
might contact The Department of Human Services to determine if you
are eligible to receive Medicaid. There are asset and income limitations
to this program but it certainly doesn't hurt to examine this possibility.
Another alternative might be to contact the
drug company directly to see if they have a special program to obtain
this drug at a discount or to determine if they have any special
programs for those who cannot afford the necessary medications.
Q: Why do so many young people with disabilities end up having
to live out of state instead of in residential facilities in Illinois?
number of young adults in Illinois who need assistance is staggering,
and the funding is not available to provide all of the necessary
support. Other states might be more likely to fund these types of
programs, or perhaps a specific need is best addressed in a particular
You might consider contacting your legislator
to ask that same question.
Q: Our son has a disability but has some good skills and
we think he could work somewhere. Is there anyone who would help
place him in a job?
are a couple of alternatives in helping your son find a job. You
will soon recognize that you are the best advocate for your son,
so you might contact some companies directly that you think might
employ him. Other options might be to contact local agencies which
provide services to the developmentally disabled. This type of agency
might have a supported employment program. Another option is to
contact your local case management program so that your son is signed
up with a caseworker. They can help you evaluate the best options
for your son.
Q: My daughter has been ill for a while and has just been
diagnosed with Multiple Sclerosis. Her father couldn't cope with
this and has left us. I don't make much money and don't know where
to turn. Can you advise us what to do?
are a few places to look. First, based upon your daughter's age,
she might be eligible for Social Security and/or Medicaid benefits.
Contact your local Social Security agency office to start. Next
you should contact the local chapter of the MS Society; they have
support groups that provide significant moral support, which is
very important right now for you and your daughter.
Q: We are 70-year-old parents of a 35-year-old son with a
disability who has lived at home with us his entire life. We are
very worried about what will happen to him when we are gone or can't
take care of him any longer. What should we do?
know this is a difficult thing for you to think about. Most parents
just want to live "one day longer" but know that they must plan.
Is your child receiving government benefits? If so, you will need
to plan financially for him through the use of a Special Needs Trust.
In that way, you can financially leave assets through your own will
or trust for his supplemental care, and these funds will not replace
his government benefits.
In addition, if you are currently his guardian,
in your will you need to designate your choice for successor guardian.
This is the person or persons who will take over the care responsibilities
for your son. This is the tougher issue, but know that you can nominate
who you choose, rather than let the courts appoint whoever shows
up to take the job.
Finally, you should call the local case management
agency. They can assist you in identifying residential options for
your son's future.
Q: I am the older brother of a 20-year-old sibling with a
disability. My parents have always taken care of everything but
don't tell me anything about what they do. I am fearful that if
something happens to them I'll be responsible for my brother and
won't know what to do. Help!
suggest you sit down with your parents and tell them how you feel.
My guess is that they have the same concerns, but did not want to
"burden" you with responsibilities that they see as theirs. They
will probably feel some relief that you are concerned and are willing
to educate yourself in regards to making sure that your sibling
is OK. Make sure your parents have set up a Special Needs Trust
for your sibling, and that they have designated a successor guardian/advocate
for your brother in their wills.
Q: Our child with a disability has been on a waiting list
for one of the residential facilities for more than 10 years and
we are wondering when we will find out when he can move in. Who
do we ask and what do we ask them?
should contact the residential facility immediately. You might find
that they have your child's name but also you might find that the
list is just "not real" or that it is so long that, in fact, it
is "not real". Contact your local case management agency immediately
and start the process of having a caseworker assigned to your child
to help identify some options. Also be proactive and visit the residential
facilities. Find out what is out there. Get in front of the agencies,
meet the management and personnel, and volunteer your time. Take
the first step NOW!
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