Maureen Ilder works for the Parents Coalition for Persons with Disabilities in Summit County Ohio. She is the past president of the Autism Society of Ohio, she is the past president of the Summit County Board of MRDD, and she is the parent of a daughter with autism. Maureen we’re going to talk about transition planning for a high school student with autism.
Yes, I think there are several examples that I could give when we are speaking of transitioning from school to post graduate life.
The first of those is vocational, I think it’s very important to start early to determine the likes and dislikes of the individual because that has a lot to do with whether or not they’ll be successful in what they do. My suggestion is to volunteer at many different types of activities, both within the school environment and without the school environment to determine what might work for the individual. You can always change things as time goes by if the person’s preferences or their likes and dislikes would change. What I suggest is that the IEP team meet early on, as early in high school as possible, and include some experts on that team. Some of the experts that I would suggest would be perhaps the high school’s departments of vocational education, the county board of MRDD which is ultimately maybe responsible for what happens with the individual, sometimes there’s a district compacter in which the district works with other districts, experts from there, I would include experts from transportation also, and I would have them do informal and formal assessments. Certainly the teacher and the teaching staff would be part of this. And just to look at O.K. what could this individual do, let’s try some things. In my daughters case, she tried many different things, most of which eventually did not work for her, but it gave us real knowledge as to O.K. this will work, or this won’t work. One area I can give an example of is food service, my daughter really does not like to handle food she has issues with touching things, but we tried it and it didn’t work at all. But it gave her experience, it made her feel like she was doing something, years later she walked into a restaurant and started wiping the tables, even though we were there to eat. So I think it was a good example of what one thing that you could try. In my daughters case she ended up doing what we affectionately call office grunt work, which is things such as collating, filing, mail delivery, putting packets together, stamping, and she loves that work. And so for her it has evolved into several jobs in the community. So I would suggest as many opportunity as possible, and not with the idea that they’re all going to work because probably some of them will not. Rehabilitation services commission is a government agency whose mission it is to find jobs for people, so I would also include them in that group of experts that’s working towards the vocational piece. If your goal for your person is a job in the community, then I think you need to look carefully at O.K. what supports will be needed to do this? And if you do need supports, and most people with developmental disabilities do need some support, then who will pay for that? So for ongoing job in the community I would explore waiver programs, any different funding streams that might be helpful, and we will talk more about those as time goes along. By graduation, the person should be ready for the next step and that means on day one they’re ready to go to work. If that doesn’t happen, the gap time could be detrimental to the individual.
Residential which is my second transition piece is it can be expensive, so it’s very important to look at who will fund residential and we’re going to talk about that more as we go along also. And I’d like to say that it’s very important to have a plan. Quite often when you talk to individuals about their loved one that has special needs they’ll say, well you know what, he or she is going to live with me, that’s what we’ve done, that’s what we’re going to do. And I would suggest you have a plan just in case something happens that that can’t work out. It’s important to look at, O.K. who would my individual be contented with, who would be able to give my individual the type of life that he or she has at home. And I would do that early on even if you don’t have any immediate plans.
Guardianship is another thing I would look at. Can your individual make wise decisions on his behalf or her behalf, and if not then I would certainly look at guardianship at the age of eighteen, that’s when they become an adult in the state of Ohio. I think it’s important, as far as the individual’s concerned to start talking early on about your life in the community. I know with my daughter we would say to her, well someday when you’re grown up you’ll live in the community just like your brother does. And just to give that person the idea I won’t always be in this home. I may someday have a life of my own. I think that helps with the long-term transition from one side to another. As part of that your loved one may need daily living skills, or may already have them. But I know with our daughter we looked at can she do things such as take care of herself, personal hygiene, handling money, laundry, simple cooking, and that doesn’t have mean actually cooking but it could be helping with food preparation, setting the table, those kinds of things. Also organizational skills, what do they need when they go to work in the morning and who’s going to get those items, so I would look at all those. Many special education classrooms today have homemaking centers in them. That they may have a laundry area, they may have a bed that can be made or unmade, examples of cooking, and I would ask the IEP team early on to write those skills into the IEP. And so that part of the person’s day, besides the vocational exploration and the academics that are going on, would also be daily living skills. For some of our individuals, the longer you can rehears, if you will, these things the more they’re likely to do better at them as time goes along. Again, important to write it into the IEP because otherwise it may not happen. I have always tried to strive with my daughter for an atmosphere of working together to make it happen. You know it’s now O.K. someone’s going to take care of you, it’s you’re going to work to take care of yourself, to go to work each day, and this type of plan.
The third area is leisure, I think it’s important to transition in leisure because sometimes we don’t think about leisure activities, but it’s important to have a social life after graduation. None of us should have work and no play; it’s not a good idea. So I think it’s important early on to look at activities that your loved one may enjoy. These can include exercise activities, such as walking, swimming, biking, ball sports, bowling, many areas have pretty well balanced special Olympics teams; in which there are many sports that the person can choose from. And then I would look at, O.K., who’s going to do these things. The time may come when you as a parent, or caregiver, can’t do it all, try to see if you can get some supports in place that can make that happen for your individual. They could be natural supports, such as people from your church, people from your school team that like to volunteer, extended family that likes to spend time with this individual. But I would definitely look at that and look at what it’s going to look like after graduation. I would also include movies, if they like to go to movies, hanging out at the mall, as typical as possible a leisure program for your individual. I would include those activities on the transition plan and who will provide the support. That way when the person does transition there are not areas of their life that are left out and you’re not sure how to get those.
Well I always say, as early as possible. In some areas I may even mention pre-school as we go through this. But definitely looking at middle or junior high school, to high school. I would definitely look at, O.K. what options might be available for my individual, can we explore, what jobs can we try, it’s good to kind of be creative. Are there jobs within the high school setting that might work for this individual to volunteer and just try out and make that part of their day? Same thing with leisure activities, what areas can be tried out? Financial, and we’re going to talk about this a couple times, I just want to make the statement that as early as possible you should start looking at estate planning, make sure the person has a plan for what’s going to happen to any monies as time goes on. There are seminars available; there are attorneys who specialize in this, so it’s fairly easy I think to get information about that. Eligibility for programs, government programs such as SSI, is my individual eligible or when can they become eligible. The county board of MRDD which really does the vocational piece and the residential piece for many individuals, I would look at their eligibility and any waiting list that the person should be on, that would include residential, that would include waiver, which is a funding option. You can always say no if for some reason something is offered and you’re not ready to explore that step yet. I would know what to do when; I think it’s real important. By early high school, as I mentioned earlier, the IEP team should be exploring options and looking at volunteer opportunities for the individual. Within two years of graduation then, two years ahead, I would be finalizing that plan and looking at the next step. Hopefully on day one the person will be ready to be in the community at whatever option is chosen for them. Residential, and once again, have a plan, you may not want to use if for a while, but have a plan. I would have supports in place if you decide to keep the individual at home for a while, which many folks do, because you can burnout too as a loved one. So there are waivers that address just in-home supports, and I would certainly look at that. Here again, that’s to be discussed with your county MRDD, and your school team, O.K. what’s going to happen when this person graduates? Who’s going to take care of all these areas? Same thing with leisure, start early, and try to have a plan for leisure activities that can continue beyond graduation.
There are several areas that you can look at, and they really would apply to anybody with developmental disabilities, and I’m going to talk about them briefly and then I’m going to talk more in terms of a person’s need and their funding source which will be important. There are group homes; typically in the state of Ohio there are group homes for four individuals. That’s the typical model. Now there are some that are smaller, so they might involve three individuals, maybe even smaller then that. There are also some that are a little larger. The trend though has been four individuals, because it’s kind of a natural family size setting. And since there will be providers in the home also, you don’t want to have too large a group. So typically a group home is four individuals. There’s also foster care. Some individuals’ preference and their family preference is for them to continue living within a family setting, and the foster care is more a family setting. The person lives with the family and pretty much does their activities, and explores everything within the realm of their lives. This is a good option for a lot of people who feel that a group home would not be appropriate. There’s also the family home, many individuals continue to live in their family home. Again, I would have a plan just in case something happens, and I would also look at others supports besides just the family. But family home is a big option for a lot of people. The last one I’m going to talk about is apartment living. Some individuals will choose to live on their own, or with another individual in an apartment in the community. Before you decide what might work for your individual, I would look at the individuals needs and the funding that will be available when they graduate, or when they decide to move toward residential placement. A person who needs twenty-four hours on site care, someone in the same facility that they are twenty-four hours, is a little more costly, then a person for example that can pretty much take care of themselves. So I would look at that when you’re thinking O.K. which option might work. If the person is able to take care of themselves and they need minimal care, then moving into an apartment alone or maybe with a friend is a very viable option. So I would look a the person’s needs as well as their preferences when you decide what setting might work best for them.
O.K. well I think it’s important to look at several areas before you even start. One of those if you’re going to move, let say into a group home or some places now they call it a congregate home, I would look at the location. What location would best serve this individual? Of course their community that they live in now might be easiest and best answer. Sometimes that’s not possible. It could be that you’re looking at an existing home that’s in another community. If that’s the case, then I would certainly look at what supports could be in place for this person in that community, for example natural supports for church or special Olympics, maybe friends that live there that would be interested in offering your person some natural supports. I would look at the familiarity of the environment from the person’s point of view. It’s hard enough to transition to a new home, most of us can recall when we did, and it’s even harder if it’s totally an unfamiliar location. Where are the stores, where are the sports activities such as bowling and so on. So I would spend some time really looking at those and familiarizing my individual before I made the actual transition. I would also look at the provider for this person. Who’s going to take care of my loved one when he moves from my home to a home in the community or to a different setting in the community? There are provider agencies that do residential care for individuals. The larger counties have lots of those providers usually and the smaller counties have fewer. There are agencies that will cross county lines. So I think that I would explore all the options that might be available in your county. There are also individual who contract to provide and they do it on an individual basis. Typically your county board of MRDD would be able to supply you with a list of agencies and also a list of individuals who do this. And then I would suggest that you interview as few or as many providers that you feel you need to in order to make an informed decision. In conjunction with that we have a list of questions that will be available as part of this webcast, one is from the state departments of mental retardation and developmental disabilities, another one is one I kind of pulled together with the help of a provider who actually provides for folks with autism, and the third is the list that I’m going to suggest that each family make up because your individual’s different from everybody else and there might be questions that you would ask a provider that wouldn’t be important for example to me. So I would take those lists and then I would kind of fashion my own list and ask the providers, as many or as few questions that you think might be helpful. The last area I would look at, which is important for individuals with autism but also for anyone with special needs is structure. What will the structure of this individual’s day look like? Maybe the work day will be pretty much what’s already in place and that’s fine, when my daughter moved to the community I was concerned about her lack of structure if you compared it to the structure we had at home, so what we did was have here move in on a week night. She got up in the morning, got dressed, ate breakfast, went to work, came home, and the day just flowed. We actually did not leave her in the group home on the weekends for a couple of weeks. Now people can do this however it works out for them, but we were afraid that weekend structure might be detrimental to her ongoing happiness there. So we waited a few weeks, and when we could see that she was adjusting fairly well and seemed to be doing well, then we let her spend the weekend. So I would look at that piece O.K., and I would ask the provider, how can you structure my individuals day on a day that typically doesn’t have a lot of structure like the weekend day, a Saturday or a Sunday. Going along with that, how do you prepare the individual? Let’s say you’ve chosen a home, I would talk about the new living situation, I tried to be as positive as possible, I would leave all the negatives out, and you’re going to being feeling some negatives yourself, you’re going to be anxious, Oh what if this doesn’t work? But I would be positive when I talk to my individual. It may take a while. Some of our folks can’t communicate real well verbally and they may not have a lot of questions, they may seem like oh they’re doing fine. But you kind of have to stay with it, talk about it, O.K. this is what your new home will be like. You know when you have a chance going through your day, just bring up different times of the day in the new home, meal time, bed time, and try to have them get use to the idea before it ever happens. I know in my daughter’s case, weeks went by and she had no questions, I would say, you know at dinnertime you will get together with your people in your home and you’ll make dinner, nothing. One night right before she moved in, I was in a different room, and all of a sudden she hollered out, who will be there when I wake up, and I knew that she did have some anxiety, but I was able to allay her fears, I said oh you know when you wake up at home Mom and Dad are sleeping, but when you wake up in your home somebody will be awake and they will be there to help you if you need help. So well I think, just kind of wait them out maybe a little bit and see if they have questions or concerns. I would visit the home several times, at different times of the day, I would spend time there with your individual and I would also have your individual be there by themselves. Go for dinner, spend the night, different night, go for the weekend that way when they move into the home it’s not a brand new situation that they are completely unfamiliar with. If the provider agrees, take as much time as you need, I would not hurry that transition from home where they are now, to home in the community. I would also, and we mentioned this before, drive around the area, point out stores, theatres, bowling allies, churches, the ice cream store, whatever’s important to your individual. So that the area looks familiar as they drive into it. I would also, while I’m doing all this educate the provider as much as I possibly can. Speak to the administration of the provider agency, the house manager, the person may have a different title but ultimately they are the manger of the home, or the coordinator of the home. And I would give him as much information as possible; you can never give them too much information. Chances are they may not read it all anyway, so give them as much information as possible and you can certainly add to that as things come up after the person moves in. How involved can the family remain? I know families are concerned about this; typically you can remain very involved. It’s always O.K. to ask questions, be interested, be concerned, how can I help? Show appreciation; people like to think they’re doing a good job. So I wouldn’t start with all my negatives, I would start with I really like the way Joe is enjoying meal time so much, or I love the way you all went to the zoo, whatever that you can say that’s positive, but then I would certainly share any concerns that I have also. Remember Utopia doesn’t exist in our homes or in any other home, so I would have a positive expectation but there are some things that you may have to work through. After your person graduates, you will not longer have an IEP, you will have an ISP, or an Individual Service Plan, the name changes, but that’s what it is. And so I would definitely include any areas that you feel are necessary into the ISP.
O.K., well this can be expense, as you can well imagine, and there are different funding sources and there are different eligibility requirements. So I would certainly explore all of those long before you’re ever ready to actually transition to the next step, which would be residential or community living. There are Medicaid waiver programs that pay for residential care; some of these have long waiting lists. So it’s important early on, find out from the typical players would be the county department of MRDD, the county department of job and family services; the government may be involved if you’re looking at SSI. So it’s important to check out all of these and make your person eligible if that’s possible, and then say O.K., what waiting list should be individual be on? And sometimes there’s more that one waiting list. I think the state is now looking toward combining those waiting lists, but at one time there were several. So always ask, is there anything else that we should be looking at here if my person chooses to live in the community later on. Sign up for anything that you think may be helpful, some families there person goes on food stamps when they move to the community, so that would be through the department of jobs and family services. I would ask for determination of any eligibility ahead of time. You can always turn anything down if something is offered to you at a time when you feel you are not ready for this. Funding issues can be very complicated, so my suggestion would be to explore all of this early, and also to look at different resources. OCALI is going to have a funding stream guide, so this will be helpful in determining funding available and when to access it. There’s also going to be more funding in addition to this webcast or information about funding. So I would explore all those possibilities, and I don’t think you can start too early just looking at those.
For all people with special needs, or for any of us, and particular for people with autism spectrum disorders, there can be issues, which could become, or could be civil rights issues. I’m just going to mention a few, but nobody knows your individual like you do, so I would certainly look at could there be issues in this area and explore that before the person ever moves in. A couple that came to my mind were the temperature of the house, it the house too hot? Some people cannot stand heat, I’m one of them but that’s just the way it is. Could there be issues with the house being too warm or too cool and if it is, what can you do to change that? Maybe the location of the person’s bedroom, or maybe there’s a way to have more heat in part of the house, but I would definitely look at that. People with autism sometimes have trouble with switches, they like to switch things off and on, if that’s the case in the house they’re moving to when you switch off the furnace, you may not be able to switch it back on without a repairman, or the water heater. So I would look at that and talk to the provider and see if they can maybe incase some of those switches, so that it is not an issue. You know your person at home, so I would look for things, oh this might be a problem and talk about it before they ever move in. Are there alarms in the house? Many residential homes have alarms, you can make them pretty unobtrusive though I think, but look at that. You certainly don’t want strobe lights and screaming alarms that would unnerve anyone, especially someone with autism. So I would ask about that. Do you have alarms, where are they, do they go off, do you have drills? And I think actually, providers are required to have drills. But how do they handle that? You don’t want a person with autism to become totally out of whack because of a drill that has to happen. So I would talk about that, how it happens, and how you can make it agreeable to your person. Physical restraints, some persons with autism have a behavior plan that does allow for some physical restraints if the person could be injurious to himself of to someone else. That is an issue that has to be a part of the person’s plan, it has to be in writing, it has to be detailed, and the person who carries it out has to have training and certification. It is absolutely not allowed for someone to use physical restraints if a plan is not in place and the plan is not followed exactly. So I would certainly look at, is there a need here for restraints, or could there be a need and go from there. I had one mom tell me that when they did her daughters evaluations, it came out that she could be, perhaps self injurious and Mom said, well this has never happened, but wisely any plans that were coming up they discussed it and put a plan in place. That way when it happens, hopefully it never will, but if it does then it can be addressed at the time. Wondering, people with autism, and many disabilities may wonder at times. Does your individual wonder or could he or she wonder when he’s in a new home? I worried about my daughter, she’s not a wonderer, but she moved to a home in our community, would she decide to try to walk home? Never know. So I would discuss that. Like I said you could have door alarms that are really pretty quiet, but the provider can hear, oh a door opened, and so I would definitely look at that. You definitely want to prevent any situation in which a person could wonder away from home, will cause a great deal of anxiety to everybody involved there. I think it’s really important when we talk about all these issues, and there might be many other issues regarding civil rights that you have a philosophy and a vision for your person and I would share that with the provider and make sure that all of you are on the same page. It makes it much easier to get things in place that you need to have there.
I would start with, I mentioned this before but I’ll mention it again, there’s a service provider interview guide and also some other questions that I thought might be helpful to folks watching this webcast and I would make my own list of questions. So kind of three lists combined that I would look at and I would have those in-hand when I would go to talk to the providers. The way you go about this, kind of depends on what the situation’s going to be, you may be looking at an established home in the community, folks already live in the home, you’re looking at your individual to live there also. In that case, you can talk to the administrators of the provider agency; you can talk to the house manager. I would ask to meet every person who works in that home, and obviously sometimes a sub will come in, but talk to as many as you can. Talk to them about your individual, what he is like or what she is like; see if you have any concerns that you think might be serious concerns. I would at the same time that I’m doing the interviews, I would go to the home, I would look at the home, have my individual look at the home, make several visits there. And I would go at different times, go at mealtime, see what’s going on, go at bedtime and see what’s going on. Drive by in the middle of the night if you want, but I would go at times that made me feel more comfortable about O.K. what’s going to be on here. Very important, ask to speak to other families, now the provider sometimes families are not involved with an individual, so in the house that you’re looking at, it’s possible there might not be other families, but probably the agency has other homes that have families involved. So ask to speak to some other families and take your questions such as, if I have a concern how will it be addressed by this agency, talk to other families about that. It gives you a real good feel for this probably will work or it may not work. If you’re developing a new home, and you may be, usually the county board of MRDD puts out what’s know as an RFP, or request for proposal, and that is a contract saying to you want to provide for this home, then you have a chance to interview the agencies along with the other families that you’re working with and you can ask the same questions. We did that and I thought it worked out well because every family seemed to have questions that were pertinent to their individual, or that somebody else forgot to ask. So it worked out very nicely. If the house is not developed yet, ask to visit some other homes that that agency provides for, very important. That way you get a feel for, O.K. well this is a typical group home and this is what goes on here and this is how this provider handles the provision of these individuals, and again talk to other families. Just to say briefly, the choice is up to the individual, not the provider. So lets say that you choose a provider and you feel comfortable and you feel happy and things just don’t work out the way you planned, sometimes things don’t work out in life, you can change the provider, nothing is written in stone. So don’t be afraid to make the quantum leap because you can change if you have to.
Well autism’s a big area, and now we know it’s really a big area with the increased incidents with autism. What I asked of the provider that provides for my daughter is that they provide basic autism 101 if you will, autism training for everybody who was going to be working in that house. We also did some training with the other individuals living in the house because they did not all have autism. So I think it’s really important to do that. In Ohio we’re fortunate, because there is what’s know as the crest network, which is a statewide network of fifteen residential providers that have a collaborative that work together to provide for individuals with autism. They have a training initiative, as part of that, so I would certainly ask the agency, are you part of the crest network? If they’re not, and they may not be, then I would say O.K. now how are you going to accomplish autism training and whose going to do it? It’s possible, they may not have individuals with autism, or they may not know that a person has autism, everybody doesn’t have a diagnosis. So, if they need your help then I would suggest some people. We all know, if we have a person with autism, we know some great professionals that certainly could consult. So I would suggest some people, or go to the crest network and find some training folks that can do that. I don’t think that I would want my daughter to live in the community, knowing that the provider did not have knowledge of autism. You also need training specific to your individual. My daughter isn’t like any other person with autism, any more than Chris you and I are alike. So I think it’s very important to list your person’s needs, and their areas of concern, and their areas of contentment, and try to get the provider to understand them as much a possible. I always said also, you can call me at any time; I’m always available when it comes to talking about my daughter. I would look at sensory issues; most of our adults with autism and many other folks have sensory issues. Look at the set-up of the home; is there a nice flow in the home so the person can move around fairly unrestricted? I think that’s very important with folks with autism. Is there auditory space? Is there a space where they can go and just quietly maybe listen to music? Some homes for adults with autism have what’s known as a sensory room or sluze room, which are wonderful rooms, which have pretty lights, and colors, and maybe good smells, and objects to touch, and nice sounds or noises. I would certainly ask about that, maybe develop one in your home as time goes by, it doesn’t have to be there when the person moves in. The last issue again which is wondering, which I mentioned before, if the person tends to wonder, have a plan in place to make sure that doesn’t happen. If you set it up ahead of time, you can make sure.
There are always signs that we notice in people that we feel are a part of their adjustment. I think it’s important to remember that adjustment takes time, don’t expect that the weekend after they move in everything’s going to be wonderful. They probably will be missing you, just as you’re missing them, so I think it’s important to take that into consideration. There are some red flags though as time goes along, and some of those might be physical does the person seem to look and feel well? Have they gained weight, have they lost weight? If so, you need to look at dietary issues, are they eating, are they maybe eating junk food, or a pattern that you didn’t follow at home and it’s making a difference. And of course are they taking their meds. Do you notice any changes in the skin, like dark circles under the eyes which could indicate they are not sleeping, and if not you need to explore that. Is the individual sleeping? And if not, why not? Are there communitive illnesses? There probably will be right at first because it’s a new home, new environment, new germs, if you will. But as time goes along if the people in the house are always sick, then I would look at, O.K. are they following cleanliness habits, are they washing their hands before they eat a meal for example, are they being careful when they blow their nose, just simple issues that might make a difference. Medical needs, are there any needs that they didn’t have before. I would suggest when you’re looking into transition, if your individual needs any medical needs taken care of, my daughter had wisdom teeth she had to have extracted, have that done, don’t make it part of the transition. Have it done ahead of time and give them a chance afterwards to adjust and recuperate before you do any other transition. Dietary, I would check weight, we asked our house, we said could you weigh my daughter every week? Well they weigh everybody, it’s kind of a O.K. exercise day and everybody weighs in, and so it’s fun and it helps us to keep check on my daughter’s weight. I would discuss all of these things again, ahead before the person moves in. Emotional, you certainly may see some signs of anxiety or maladjustment, beyond transition; I would give that a try. One of my friends told me that it took her daughter several years, and I know that seems impossible, but she was adjusting but just slowly. So you kind of have to give it some time, but I would certainly, if you’re individual has anxieties, or symptoms they’ve never had before, they I would certainly have a very detailed meeting, what’s going on here, and what should we do? I would have certain expectations, this is the life I want my person to have and this is how were going to get it done. And I would meet with the provider regularly at first, we set up a meeting for every month, I’m not sure they wanted to, but they went along with it. And then as time goes by if things are going well you can always say O.K. then we’ll do it quarterly, then we’ll do it once a year, whenever it’s needed. But have a format in which you can discuss, and I always keep a running, O.K. I’m worried about this I’m going to bring this up, I’m happy about this I’m going, these kind of things. Keep a running tab so when you get to the meeting, you have your list in front of you.
When you’re doing transition, try to do one at a time. Try to do transition to vocational, the after graduation piece separate from transition to residential, separate from any other transition you’re person’s going through. You can’t always do that, but by planning ahead you can try to do that. That way if there are adjustment issues, and there may be, you know what’s causing it. You don’t have to further explore, O.K. is this a house issue, is this a work issue, so I would try to do transition one at a time if you can possibly do that.