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LIVING INDEPENDENTLY
By Martha A. Churchill
How your grown son or daughter
with a developmental
disability can
leave the family nest.
How you, as a parent,
can obtain your independence.
What is
independent living? That means your son or daughter lives
away from the parents, with paid staff to help as necessary with
cooking, shopping, cleaning, daily hygiene, medications,
budgeting, and all the rest. It means the adult with a
disability is able to live independently of his or her parents.
If you are looking for
independent living for your adult son
or daughter, there are some simple steps you can take. Start at
about age 16 or 17 with the first step. If your son or daughter
is older than that, start now.
Here are the steps to
independent living for your DD
(developmentally disabled) son or daughter:
A. Looking and visiting
B. Successful PCP meetings
C. Respite
D. Tentatively moving in
E. If all else fails….
As soon as your son or daughter turns 18, he or she is an
adult. This is true no matter what the mental capacity. Legally,
you are no longer responsible.
Even so, as a parent, you may feel you are entangled in a
hopeless situation. You are the only person who seems able to
care properly for your child. If you are no longer responsible,
who is? No one is stepping in to take over the job for you. You
can’t imagine how your child could live without you.
This essay will explain how to accomplish the steps towards
independence, for you and for your child, if you would like your
child with a disability to live independently of you. You also
need to communicate effectively with CMH (Community Mental
Health) to obtain your goals. Keep track of who you talk to, and
when, so that you will have good notes in case you need to
enforce your rights later.
A. LOOKING AND VISITING
If you have always served as caretaker for your child, it may
seem hard to think of your developmentally disabled child as an
"adult." You have trouble visualizing a world where
your DD adult could live away from your safe home. So, the first
step towards independence is looking. That is, request an
opportunity to look at a residential situation.
You can do this by contacting your son or daughter’s case
manager (called "Supports Coordinator") at CMH and
asking for a chance to see a place like this. It doesn’t have
to be a place where your child could move in tomorrow. But it
ought to be a place where DD adults are living successfully. And
the adults living in this home ought to be somewhat similar to
your child.
If your son or daughter can get dressed, walk around, engage
in conversations, and go on bike rides, ask for a chance to look
at an independent living situation where DD adults like that are
living.
If your son or daughter is unable to walk, doesn’t speak,
can’t communicate, and needs full-time nursing attention, then
you need to visit a place where people like that are being cared
for (or, as they say at CMH, being "supported" by paid
staff). What kinds of places will best serve your child’s needs?
An adult foster care home? A house which has been outfitted to
provide something similar to a nursing home? A group home? A
larger facility? Smaller? Use your imagination.
Remember, you want to see a place like this with your
own eyes. How can you decide whether or not to continue caring
for your son or daughter at home, when you have never observed
any alternative way of doing things?
When asking for "supported living" from your child’s supports
coordinator, remember the two rules for making requests: (1) Be
specific. (2) Give a time frame.
WRONG: "I was hoping that one of these days I could see
a place that might be suitable for someone like my Jason."
RIGHT: "Please show me a residential situation similar
to the sort of place where my son Jason might live, that is safe
and comfortable. I would like to do this within 60 days."
The best time to make a request of this type is during your
child’s PCP meeting (Person Centered Planning). However, you
ought to feel free to make requests of this sort any time it
pops into your mind. If the supports coordinator says you should
wait until your PCP meeting, just say that you would like to
schedule a PCP meeting within two weeks.
Here is a little secret: you don’t have to wait a year to
have a PCP meeting. You can have one any time you like. Just
ask.
Here’s another tip: don’t rely on CMH as your only source
of information. Find out what private organizations are doing in
the way of residential placement, and some individual families.
In southeastern Michigan, I have seen a variety of private
solutions to the housing problem, such as a cooperative of
families who rent a house and sub-lease it to their adult
offspring. Or, how about a small "corporation" to buy
a house for several people, with a nonprofit as managing partner
(for tax purposes).
I know one mother who made a contribution to a charity, which
in turn purchased a house where her autistic son could live,
along with two other young men. I am aware of at least two
religious organizations in Michigan who are hot on the trail, helping
families create
housing for DD adults: Angels
is one of them; Bethesda Lutheran
is
another. We have a great local group in Ypsilanti called
CHA, or Community Housing Alternatives, (734) 482-3300.
If you don’t go through any private organizations, and you
want CMH to take care of it for you, they are obligated by law
to provide supportive housing for your DD son or daughter, among
other things.
Example: Suppose "Amanda" wants to move into an
apartment with another young lady, and the rent is $800 per
month with utilities. Both of these women will need to have paid
staff in the apartment, 30 hours per week, to help them with
household tasks. They need help with meals, cleaning, laundry,
getting dressed, making the bed, budgeting, transportation, and
shopping. With income of just $512 per month in SSI for each
person, through Social Security, they have just over $1,000
between them. That is barely enough for rent, let alone the cost
of food, staffing, and other expenses.
Here is a possible budget for these two ladies: Each of them
pays one third of her income ($170) towards the rent. CMH pays
the balance of the rent and utilities. CMH also pays for the
employees who will take care of them in their apartment. CMH
should pay for their transportation costs, food, clothing,
furniture, and even some recreational expenses. The point is,
living independently must be made "affordable" for
them with the help of CMH.
The key is to ask for all this during the PCP meeting.
B. SUCCESSFUL PCP MEETINGS
PCP stands for Person Centered
Planning. This is the key to
independent living for your son or daughter.
To have a successful PCP meeting, you need to have all the
right players sitting around the table. What agencies are
involved in financing your child’s care right now? How about
FIA (Family Independence Agency)? If they are providing any
funding for your son or daughter’s care, or if they might,
tell your supports coordinator to invite a representative of FIA.
The same goes for your child’s teacher, if your child is
still in school. Insist that the teacher be invited to the PCP
meeting, along with anyone from the school who seems
understanding and supportive.
Do you have any friends or neighbors who really care about
your child? Who want to be helpful? Go ahead and invite them. It
can’t hurt. You need all the help you can get, and having your
buddies nearby is a smart idea even if they are not
"experts."
Look around for advocates in your community who know how to
obtain services. In southeastern Michigan, there are a number of
agencies and individuals who can help you, and some of the help
is free.
Keep in mind that advocates sometimes have a political view,
or lean towards one certain lifestyle for all DD adults. Do not
let anyone push you around. Listen to what others have to say,
but do what you think best. Each person is different, and what
works for one DD adult may not work for your son or daughter.
As an advocate, I have my own bias. Look how hard I am
pushing you to give your grown child independence! Remember, you
can disagree with me. Make up your own mind.
The PCP meeting does not have to be held at the CMH office.
It can be held any place, and any time. If you work during the
day, ask for a meeting in the evening. If your child feels more
comfortable at home, ask that the meeting be held at your house.
It isn’t that hard to prepare for a PCP meeting. Write down
a list of things your son or daughter needs. Write down what you
need, too, in order to help your loved one. Go through the list
systematically, and for each item, ask who will accomplish it,
and when.
WRONG: I was thinking that maybe, one of these days, Zeke
will eventually move out on his own.
RIGHT: I think Zeke ought to be moving out on his own by this
November.
Do not try to
"help" your child's case manager by offering to look
for a residential placement. If anyone other than the case
manager is supposed to be doing the work, nothing will get
done. The case manager can legally ignore all the hard
work done by others, and then you are back at Square One.
You are not being selfish
by being assertive. Ask for
what your child needs. You are being responsible! If you don’t
stick up for him or her, who will? For more information on
what someone on Medicaid may be entitled to, click on MEDICAID
PAY.
After the PCP meeting is over, you should receive a written
report. Read it carefully. Does it say WHAT is supposed to
happen? Does it say WHO will do it? And most importantly, does
it say WHEN? If any of that information is lacking, write a
letter to the supports coordinator and point out the missing
information. Your child has a right to a report which accurately
reflects his or her needs, and gives a deadline for CMH to
supply
those needs. If there is no deadline, it will never happen.
It’s a whole lot easier to accomplish something that was
spelled out clearly in the PCP report. That includes Who, What,
and When.
WRONG: "Sallie needs dental care."
RIGHT: "The supports coordinator will take Sallie to the
dentist by February 15 and personally see to it that she gets
her teeth cleaned."
C. RESPITE
It is possible that the places you saw on your visit were not
in safe neighborhoods, or were not supervised properly. Maybe
the building appeared uncomfortable, drafty, or unsafe. Maybe
you don’t like the idea of having your child share a home with
the people you saw.
Don’t give up. You can voice your concerns, and request a
residential situation be set up that meets your child’s needs.
If your child needs more staff, say so. If the home you saw did
not appear safe or comfortable, say so. Request that an
appropriate place be created or established where your child
could live.
It is possible that a suitable place is found, but it isn’t
near your home. It might be in another city, or even another
part of the state. Don’t give up. You can request that your
child go there for "respite" or you can request that
another place just like it be set up in your town.
Once you have seen a place that seems reasonable for a person
such as your son or daughter, the next step is to try it out for
a very short visit. This is known as "Respite." It is
called "Respite" because it gives you a chance to
relax and get on with your life, knowing that your child is
being taken care of.
Some respite programs are set up so that you can have your
child stay there for a week or two. You might want to have just
a weekend, or an overnight. In fact, you can work up to it even
more slowly than that; ask for a few hours one afternoon, or
just let your child go there for dinner some evening.
The nice thing about respite is that it gives you a chance to
"test drive" your child’s future living situation.
You can get the bugs out of it by noticing anything specific
that needs to be changed or improved, and then discussing it
with the supports coordinator. If you don’t ask, you don’t
get.
WRONG: I
changed my mind, I don’t want to leave Becky in
respite.
RIGHT: Becky can stay in respite, but I am afraid she might
start choking and the staff here are not trained how to deal
with it. What are the chances of arranging for staff who are
medically qualified with respiratory problems while Becky is
over here?
Where respite is concerned, don’t overlook summer camp.
Your grown son or daughter could spend a week or two having fun,
while you decompress after the many months you have spent caring
for your child. Even parents with "normal" kids need a
break now and then. If you have trouble with the cost, check on
scholarships, and also ask the supports coordinator if CMH can
cover it (for example, it might be considered "in home
respite.")
D. TENTATIVELY MOVE IN
Suppose you have an adult daughter who is moving into a new
"permanent" home, leaving her parents for the first
time. That does not mean she is locked into that one residential
setting, and can never change her mind. In fact, she can just
move there for a while, and try it out. If it doesn’t work out
she can either try something else or return to the parents.
Remember, nothing is written in stone.
After your child is moved in, whether it is an adult foster
care home, a group home, an apartment, or a more institutional
setting, keep an eye on the situation. Visit regularly. Visit at
odd hours. Visit without calling first. Drop in.
It is a good idea to become friends with one or more of your
child’s caretakers. You will want to do this for several
reasons. First of all, the kind of person who takes a job like
that is probably someone special, someone you enjoy knowing. I
have met some of the nicest, most wonderful people by getting to
know the folks who were working in a residential setting where
my brother has lived.
Getting to know your child’s caretakers is handy because
there are times when you will need something, and having the
right name and phone number can work wonders for whatever
unexpected events might crop up in your family.
If something unusual or dangerous is going on at your child’s
home, your first hint of trouble will probably come from a quiet
whisper by a staff person you have befriended. "Don’t
tell anyone where you heard this, but…" Keep an eye on
any other DD adults living in your child’s home, and speak up
if you see anything dangerous or harmful going on. If you have
time, get to know the families of the other residents.
No matter how wonderful the home, usually little things will
happen that are not what you had in mind. Try to be flexible and
open-minded. Work towards changing and improving the home. Work
towards changing the system. Check around for other living
opportunities.
Don’t give up. If you take your child back to your home
without trying to fix the problems, you will just be postponing
disaster. It would be awful if others had to help your son or
daughter make the transition to independence, after you were not
around any more to help. You can even set up your own housing
corporation!
E. IF ALL ELSE FAILS….
Do these steps towards independence sound too
easy? If all a
parent has to do is ask, why aren’t more DD adults leaving
their family homes and venturing into group homes, apartments,
and other living arrangements?
In Michigan, the law says that DD adults who ask for services
(including supportive housing!) are supposed to receive those
services within a reasonable amount of time, and without
waiting. Most people don’t know that! Parents don’t
bother asking, because they assume that there are long waiting
lists and that nothing is available. "Why bother?"
they ask themselves.
Unfortunately, CMH is doing nothing to dispel the hopeless
attitudes found among parents. If everyone thinks there is no
use trying, that is to the advantage of CMH because the
government saves so much money.
Change your attitude, and then grab a big stick. You are
going to start beating the bushes. You will be surprised what
can happen for your son or daughter if you know what to ask for,
and how. Here are some tips:
Conflicts
Your son or daughter probably has a supports coordinator, who
is employed by CMH. Think about it: every time you ask her for
something, you are really asking CMH to pay for what your person
needs. You can’t expect an employee of CMH to try very hard
getting money out of her own employer. It’s a conflict of
interest.
How many people do you know, whose job involves going to
battle against their own boss?
The supports coordinator is probably a helpful, kind, and
well-meaning person. But she can’t get blood out of a turnip
when her paycheck depends on saving money for her employer. She
can go to bat for your child, but only up to a point.
Ultimately, you have to be the one who insists on your son or
daughter’s rights. Don’t depend too much on any CMH employee
to do it for you.
WRONG: Do you think it would help Noah to live somewhere that
is more quiet?
RIGHT: Because of his autism, Noah is disturbed by too much
commotion. How long do you think it will take you to find him a
place that is more quiet?
Guilt trips
"We’ll get a place for Emily to live, but we have to
find homes on the basis of need."
When the supports coordinator says that to you, what does it
mean? It means you don’t NEED an independent home for Emily.
But guess what? They say the same thing to everybody. It’s a
psychological tool designed to make you back down. If you stop
asking for a home for Emily, CMH doesn’t have to worry about
meeting Emily’s needs. They can leave the entire burden on
your shoulders, as long as you will let them.
If some other family "needs" housing even more than
Emily does, then CMH had better get some more money allocated to
meet the needs of all the DD adults who ask for it. Then, CMH
would be doing what the law says they should.
Your money
"In developing a budget for Tim, we need to take into
account whatever assistance the family can provide."
When the supports coordinator suggests that you kick in your
money for the support of your son or daughter after the person
leaves your home, just say no. The law says that CMH can take
into account any funding from family and friends, if they are WILLING
AND ABLE to pay it. That does not give CMH the right to
twist your arm and pressure you into paying for your grown son
or daughter. That does not give them the right to make you feel
guilty for not taking care of your person financially.
Your legal obligation ended on that person’s 18th birthday.
If you had money growing on trees, you would be using it for a
special needs trust, not to support your child while you are
still around. Do not be rude to the supports coordinator, but
you have already invested more than your fair share for this
person’s welfare. Make it plain that you are not chipping in
any money.
WRONG: Well, I can probably find the money for Trevor to go
bowling each week.
RIGHT: I have my money tied up right now, and things are kind
of tight. Can you put Trevor’s bowling into his regular
budget?
Medicaid
Because your CMH has a
legal obligation to provide for the
needs of your adult son or daughter, it is against the law for
them to put you on a waiting list. If they stall around and don’t
take action, they are violating federal Medicaid law. Reasonable
requests by a DD adult (or on behalf of the adult) are supposed
to be honored without waiting.
Supportive housing is a
reasonable thing to ask for. It should take no more than 90 days to get an apartment for your DD family member, in most
cases. Where really difficult medical problems are involved, it
might take longer, but no more than six months at the most.
It is unfair for them to deny services to someone with a
disability just because some bureaucrat didn’t have time to
fill out a pile of paperwork. I saw a supports coordinator stall
for time by making an application to an apartment complex on
behalf of the consumer, knowing it would probably be denied. CMH
argued later that they were "busy" working on the
case, but in fact they were just running around in
circles.
If it appears CMH
is stalling,
or failing to give you a specific plan in writing, file a
request for a Medicaid fair hearing. Suddenly, they will pay
attention to your problem and provide the services you have
asked for.
Drop off
Remind your supports coordinator that if you wanted to, you
could drop off your son or daughter at a hospital or homeless
shelter and you would not be legally responsible. You are
searching for a humane, sensible solution to the problem so that
you do not have to do something that drastic. Point out that you
want to see your son or daughter in a safe, comfortable home,
and what would happen if you were killed in an accident? How
would your person be taken care of?
Always stay aware of the fact that you are the one who cares
the most about this individual, but your legal obligation is
ZERO. This is true even if you are the person’s guardian. As
guardian, you have a duty to help the person choose the best
option. But you don’t have to personally support or care for
the person.
Look at it this way-- if the individual needed an
appendectomy, the guardian would choose a doctor or surgeon. But
the guardian wouldn’t perform the operation. It’s the same
with housing: the guardian, if there is one, chooses where the
person will live, based on the options available. But the
guardian doesn’t have to supply the home.
Hang tough
I really like my brother’s supports coordinator at CMH. She
is a wonderful person, and she honestly cares about my brother’s
welfare. At times, she will fight for his rights to services
that he needs. But I have to be realistic. There is a limit to
what she can do, being employed by CMH. Ultimately, as the
advocate for my brother, I have to speak up for him and insist
that he be given a place to live.
Laura Baird, an attorney who was elected to serve in the
Michigan Legislature, told me she had to fight fiercely for her
DD son to get into a group home. She is an attorney, and she is
married to another attorney. She is in the state legislature.
And even for her, it wasn’t easy to get CMH to cooperate and
provide suitable housing for her son.
Hired help
Maybe you don't have the time to
advocate this way for your family member with a disability. Maybe you
don't have the right personality for this kind of effort. So, where do you
get help?
Look for a parents' support
group for help. Find an advocacy organization that might help you, often
at no charge.
Some people actually hire a
lawyer to do this for them! If you have money, don't spend it on
bowling. Buy advocacy. Also, it is possible that CMH could be
charged with the cost of hiring a paid advocate if you needed to do so.
You have to obtain appropriate, safe housing for your person, and the advocate
may have been a necessary ingredient to accomplish that goal.
If you can't stand the heat,
find someone else to go into the kitchen and cook up a plan for you.
In the system
As long as your adult child is living in your home, and you
are performing all the necessary services for the person, CMH is
off the hook. They are saving huge amounts of money. Imagine
what it would cost them to replace you? How many people would
they have to hire, to equal one good mother?
CMH will not rush to provide housing for your son or daughter
until they absolutely have to. But once your child is "in
the system," his or her needs will be taken care of without
your constant involvement. The idea is this: get your child into
the system. Then you can just step in and fine-tune the living
arrangements, a little at a time, as needed.
What does CMH pay every year, on average, to help a DD adult with
supportive services? In Washtenaw County, the average budget is $34,541.
However, that number includes some people who live with their parents and
receive in-home staffing services. So far, I have not been able to find out
how much CMH pays, on average, for DD adults who live independently of their
families.
The point is, it costs CMH a heck of a lot more to support the person away
from Mom and Dad. That is probably why they make it so difficult for parents
who want supported living away from home for an adult DD son or
daughter. Getting your adult child "in the system" isn't easy,
but it's worth it.
Conclusion:
Your child should not be totally dependent on Mom when he or
she is 18 years old. All the more so, this should not happen
when he or she is 40 or 50 years old.
Do you want to devote your whole life to taking care of this
person? When is a good time to let go of the reins? If you don’t
let go, what will happen when you are gone?
Everyone says the DD adult should live independently. But
what about you, the parent? How independent can you be, when you
are tied down to the role of round-the-clock caretaker?
Some parents choose to take care of an adult son or daughter,
and that is fine. But let it be a choice, not just force of
habit because you don’t know any other way of life.
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