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:

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.

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.

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."

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.")

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!

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.

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.

What you can expect your CMH to offer you, when asked; click on PAYS.

Chapter III of the Medicaid Manual, click on MANUAL.  Or read the attachments to the contract between CMH and the Michigan Dept. of Community Health, describing the best practice guidelines for the CMH office, click on BPG.

General information about what is available for persons with developmental disabilities.

There is a group home in Oakland County designed for DD adults with severe medical problems, called WESTLYN HOUSE.

Get the names and addresses of the people on the Board of Directors of the Washtenaw County CMH.

Letter from a SIBLING.  

What MEDICAID will pay for.  

Introduction:  what is a Special Needs TRUST.  To read about the three types of Special Needs Trusts, click on THREE.

How to prove someone is disabled for purposes of Social Security, if the person is MENTALLY ILL, or if the person is DEVELOPMENTALLY DISABLED.