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:

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.