Gary Tonks, Executive Director of the The ARC of Ohio
During transition process, individuals with autism spectrum disorders may be eligible for funding supports that allow an individual to live and work in the community. Medicaid and Medicaid Waivers are an import funding resource to consider. However even the most informed person can find this process difficult to navigate. In this webcast Gary Tonks, Executive Director of the The ARC of Ohio, will overview Medicaid and Medicaid Waivers, and how to understand and work through the process.
Medicaid was established as a health insurance program for people of low income. Most people with disabilities have a low income, therefore they qualify. There are other qualifications, something called “Aged, Blind, and Disabled”, where are folks actually qualify as well, but it’s all based on financial eligibility plus having a disability. So if someone with autism who happens to have ten thousand dollars in the bank isn’t going to qualify for Medicaid. But someone with autism and disabled, using the Social Security’s definition of disability, who has a thousand dollars in the bank will qualify if they are at least eighteen years of age, or if they live with their family and their family has a low income.
Medicaid like any health insurance program covers hospitalization, physician’s services, most things that you would expect from any private health insurance package. What Medicaid covers that most private health insurances don’t cover is long-term care. Long term care in Medicaid would be something like a nursing home. Most of us who would have Blue Cross/Blue Shield for example would think, well I’ve got to buy an additional insurance package for long term care. You don’t have to do that under Medicaid, it’s covered. Also like most health insurance programs, Medicaid has optional benefits. Optional benefits under Medicaid, things that could go away if Ohio decided they couldn’t afford them, would be things like dental, vision, and a large program called the ICFMR program. ICFMR stands for intermediate care facility for persons with mental retardation. Most of us would think of that as our large state institutions, are ICFMR’s. So with your Medicaid card once you meet the criteria, the financial eligibility and the disability, if you have a Medicaid card and you find a doctor who takes Medicaid, you can use your Medicaid card to buy a doctor, prescriptions, or even access to a state institution. Now most the people listening to this will say, “I don’t want to buy and a state institution for my child”. But that’s an entitlement, that’s part of the package. Now because it’s a federal health insurance program, the federal government puts in sixty percent of the cost and the state of Ohio puts in about forty percent. Those percentage change from year to year based on how well Ohio is doing economically. Mississippi for example, has more of a fifty fifty match. We have to come up with forty percent for the basic Medicaid card that comes from the state treasury through the Ohio Department of Jobs and Family Services. So you apply for Medicaid at your local Job and Family Services office, just say you want to apply for Medicaid. If your child is under eighteen, the caseworker will look at the entire family income and all of your assets. They won’t count your primary residence, where you live, and they won’t count your first car. So at least in theory, you could be living in a million dollar home with a Lexus in the driveway and still qualify for Medicaid if you have very little money coming in from month to month, and you don’t have a lot of financial assets. Those assets include Trust Funds that you can get to, and various things that most of us don’t think of, like life insurance policies that you can cash in. Job and Family Services looks at all of that because to qualify for Medicaid the family has to be poor. Now once your child reaches eighteen, Job and Family Services stops looking at the family income and will only look at the income of your son or daughter. So a couple months before your son or daughter turns eighteen, make an appointment with Job and Family Services and ask to apply for Medicaid benefits. Now once you have your Medicaid, most people don’t think about getting in-home services with their Medicaid card. I mentioned the institution that you qualify for, but currently, and all of this is as of today, as of this filming, currently with your Medicaid card you can also buy home healthcare services. That’s up to fourteen hours a week of someone coming into your home and helping you out with your son or daughter. It can either be a home healthcare aide or a nurse, and you get that simply by a prescription from your doctor who accepts Medicaid. You’ll probably have to be the one to prompt the doctor to prescribe it, it was set up originally, “grandma fell down, broke her hip, she needs someone to come in and help her get dressed in the mooring”. But with Medicaid, anything that is available in a Medicaid service is available to everyone who qualifies for Medicaid. So while your son or daughter hasn’t obviously fallen down and broken their hip, they may need assistance still in getting dressed. You may need help because they are in your home, your helping your other children get ready for school and you need just someone else to help your son or daughter. If your family is low income you can qualify at any time. So if you’re low income and you’ve got a six year old who is on the spectrum, you can access the service. You go to your doctor again and ask for home healthcare services. Get that prescription, go to the telephone book and look up home health care agencies, ask them if they accept Medicaid, and you can get up to fourteen hours a week.
Exactly, the doctor in his prescription has to believe that it is medically necessary for you to have that, so taking medications is a prime example of one of those services that’s needed. The whole Medicaid system is based on something called the medical model, it’s not the way most of us think as family members, but it was established as, and we always have to remember this, a health insurance program. Where the feds or the state government or local entity is going to take care of individuals and make sure that medically they’re O.K. But many families use those fourteen hours just to get through the day, and that’s between you and your doctor. Job and Family Services won’t question your physician’s competence or ability to make that decision. It’s his or hers, they just have to say, “in prescribing these fourteen hours I believe it’s medically necessary for Gary to have this service”.
Remembering again that Medicaid is based on a medical model and it’s an entitlement, you’re entitled because your financially eligible for Medicaid and you have a disability. So if you meet that those criteria in the state of Ohio, you get Medicaid, and with Medicaid you get to buy a nursing home or an institution for people with disabilities, or a hospital. Back in the nineteen eighties there was a Mom, Mrs. Becket, who said O.K. my daughter is on Medicaid and I don’t want to buy an institution, I think I can serve her well, support her well in our family home, and oh buy the way, it’s going to be a lot less expensive then living in a hospital, an institution for people with disabilities, or a nursing home. Instead of changing the rules, the Federal government said O.K. Mrs. Becket; we’ll waive our Medicaid rules so that your daughter doesn’t have to live in an institution, a hospital, or a nursing home. And we’ll allow you to provide services or someone else to provide services, in your home, as long as it never cost more then an institution, a hospital, or a nursing home. Most of us would say, yes I can serve my son or daughter on less then a hundred dollars a day. So waiver is simply a waiver of Medicaid rules, a Medicaid of your right or entitlement to an institution.
Now to keep the cost in check, each state is allowed to apply for waivers from the Federal government. Because Medicaid in an entitlement, everyone in Ohio that qualifies financially or because of their disability is eligible for Medicaid. We have over seventy thousand people currently in our adult MR/DD system and we’ve got at least that many coming through the school systems. So if you can imagine in another ten years we’re going to have over a hundred thousand people in our MR/DD system. To keep the costs in balance the state has to prove to the federal government that they can afford to pay forty percent of the cost of the waiver, and our waivers are averaging fifty, sixty, seventy thousand dollars a year, far less then Medicaid, far less then a hospital, and the state has to apply for those waivers with the federal government, so they can cap it, they know in advance how much they can afford and then they distribute, the state or county boards, distribute those waivers based on eligibility. Eligibility depends on the waivers, because we’re dealing with the federal government, the feds have said, I don’t want to talk to MR/DD, I don’t want to aging education, you tell me who I am suppose to talk to. Ohio has said, talk to Job and Family Services. Job and Family Services is Ohio’s Medicaid agency, they’re the only state agency that’s allowed to talk to the federal government about Medicaid, and they administer all of Medicaid and all of Medicaid waivers. They have delegated two waivers to MR/DD, the Individual Options Waiver and the Level One Waiver, and then they are responsible to forty percent of the cost of those waivers. Because we have levies and county boards of MR/DD the State Department of Mental Retardation and Developmental Disabilities has then delegated the administration the implementation of waivers to our county boards and the forty percent match. So if you live in Summit County or Franklin County, those county boards through their levies have to come up with the forty percent of the cost of the waiver. If you’re getting ten thousand for your son or daughter under a waiver, your county board has to come up with four thousand the federal government comes up with six. Eligibility is something because it’s wavering an institutional requirement, you still have to qualify for the institution, so the eligibility is the same. For an MR/DD waiver, you have to have to something called an ICFMR level of care, remember ICFMR stands for intermediate care facility for persons with mental retardation, and if you have a child with autism and you are listening to this right now, the MR word is just, I don’t want you to freak out over those words because it doesn’t mean your son or daughter has mental retardation, it means they function like they have mental retardation. So they could have a varied I.Q., they could be doing very well academically, but maybe they, the fire alarm goes off and they get confused and can’t figure out or remember how to get out of the building. Maybe you still don’t feel comfortable leaving them alone even though they’re sixteen years old, maybe they don’t still know how to make a peanut butter and jelly sandwich for some reason, and that’s how they’ll be evaluated. It’s not a very scientific approach; the caseworker comes in and compares your son or daughter to peers his age who don’t have disabilities. And if a sixteen year old can usually be left alone, make a peanut butter and jelly sandwich, and knows how to get out of the house if the alarm goes off, then they’ll compare your son or daughter to that person without a disability, and if they can’t do those things, they’ll probably qualify. So you have to qualify at that level and then you also have to continue to qualify on a financial level. The wonderful things about waivers however is that they not only waive the institutional requirement, and you actually have to sign a paper saying I waive my right to an institution, but they waive the family income as well. People at Job and Family Services get upset when I use that term but, what they do is if you county board offers you a waiver, the Job and Family Services will not look at family income, they’ll only look at your son or daughter’s income at that point. So in the past if you had gone to Job and Family Services and applied for Medicaid and Job and Family Services said, I’m sorry you make too much money, if your county board of MR/DD offers you a waiver and you take your son or daughter back to Job and Family Services, they will only look at your son or daughter’s income and assets. So one of the cautions is make sure your son or daughter does not have trust funds in their name that they can access, if you’ve been saving up for college, we have college saving plans, take a good look at that, if you’ve got ten thousand dollars in a college fund, you son or daughter has just turned eighteen and they can access that ten thousand, maybe they’ve decidee I don’t want to go to college, they’ve just disqualified themselves from Medicaid which then in turn disqualifies them for a waiver.
The level one waiver and the IO waiver have essentially the same package of benefits. The major difference, and also the same eligibility requirements, if you qualify for the level one you are also going to qualify for the IO. The major difference is the level one waiver provides up to five thousand dollars a year of in home supports plus some extras, but the IO waiver goes from five thousand and one dollar a year up to the average cost of an institution. That’s pretty high, there are individual on the IO waiver in Ohio with over one hundred and fifty thousand dollars a year worth of in-home services. Those services, and this if for both waivers, would include something called homemaker personal care, that’s an individual that can come into your home or help you go out into the community to do things. It can be someone who comes in and helps you learn how to wash dishes, or can be someone to wash the dishes for you if you’re not physically able to do that. The homemaker personal care, if you’re a teenager, the homemaker personal care provider can take you to the movies; get you out into the community. Providers of those services have to be at least eighteen years of age, they can’t be a felon, they can’t have had a history of abuse or neglect of individuals with disabilities, and they have to be registered with the state of Ohio, and they’re paid by the state of Ohio. If your son or daughter is over the eighteen, a parent can be certified to provide services to their own son or daughter. If they have a sibling, that’s at least eighteen years or older, let’s say I’m sixteen I’m on the level one waiver, but my brother is eighteen, he can be certified as a waiver provider under MR/DD and get paid to take me to the movies. Or I might have a neighborhood guy that’s eighteen that I’ve developed a relationship with over the years, and your son or daughter with a disability doesn’t have to know your brother’s getting paid, many brothers aren’t going to want to do that with their kid brother, but you know there’s a bond between siblings of sons and daughters with disabilities. So, it works and we’ve been able to keep families together with these waivers, which has been wonderful. Homemaker personal care is the largest of the services, but there are other ones. With the IO waiver, and this is different for the IO, it can provide home delivered meals, so if your son or daughter has moved out of the house, or not, lives on their own and just isn’t eating well, it could include home delivered meals as well. It includes transportation; so maybe your son or daughter knows how to buy the movie ticket but can’t figure out public transportation, the waiver will provide transportation to get into the community. But there’s an entire list of services that your caseworker through MR/DD can help you navigate.
And this is also the same of both waivers, in addition to the five thousand on the level one, in addition to what you get on the IO, and again with the IO that is determined by an assessment how much you get, you also qualify for support during the day. That could be a traditional sheltered workshop, it could be supportive employment, if your son or daughter is good at crocheting and they want to crochet and have a business at home, it would also provide staff support to come in and help develop a business. We’ve worked with a young man with autism in the Toledo area that loves to bake pies, he’s used his day service waiver to bake pies and get the staff support to have a pie baking business. It also then includes transportation to get to and from work. Because these are public funds, it’s not based on availability of the funds, it’s based on your need for those funds during the day, and there are various assessment tools that can determine whether you get, and this is through the day program, funding to be one on one, or funding to have two or three other people served at the same time. And again, if your son or daughter is at least eighteen you can be certified to receive those kind of funds. We use the argument with the state that, my Mom got me my first job, my Mom provide the transportation for me to get to that grocery store, to bag the groceries, and my Mom provide the support I needed, even though I was supposedly typical. So family’s can do the same thing under this waiver and get certified.
Yes, there is a waiting list for the waivers sadly; currently we believe there are at least twenty three thousand people in Ohio waiting for the waivers. Ohio is very unique among all other states, most states you pay your state taxes, it goes to the state capital and the money’s evenly distributed. If you mention the word levy anywhere else in the United States they’re going to think you’re talking about a damn that is holding back water. They are not going to know what that means. Most of us have heard that our school funding formula has been declared unconstitutional, our MR/DD programs were established in the nineteen sixty’s because children with disabilities were excluded from Ohio’s public school system, so we adopted their funding formula for the MR/DD program, which means MR/DD is inconsistent in how it’s funded, as are our school systems. So if you live in a wealthy county, a county that has passed their levies over and over again, your waiting list is going to move faster, then if you live in a poor county whose levy keeps failing. Right now there are over twenty three thousand and it’s growing. A county board can not talk to the federal government and ask for waivers, they can only talk to the Ohio Department of MR/DD, who then has to talk to the Ohio Department of Job and Family Services, who then has to talk to the federal government. And each time along the way everyone has to promise the funding is available for that forty percent match.
For the MR/DD waivers you go to your county board and you say I would like a waiver. We’ve found it best to say and I would like a Level One waiver or I would like an IO waiver. Most counties will describe each waiver, well you can’t get more then one waiver at a time, I encourage families to apply for both waivers because the lines move separately. Some counties there’s one line and if a level one becomes available, the parent will get a call that I know you wanted the IO but the level one has become available would you like that. That’s a personal decision that you make at that time. But because there are so many people waiting in line most advocates have supported a priority list, a M.A.S.H. method of dealing with the waivers. So if you’re in emergency, which means your son or daughter is about the lose where they live, or you as their primary care giver in the next thirty days, or if things have just become so out of control you can’t do it anymore, you rise to the top of the list. Now that’s very challenging, especially if your son or daughter is still under the age of eighteen, you have a legal and moral obligation to take care of your son or daughter. So under eighteen, we might have to involve children’s services at that point, unless you can convince the county board and they have waivers available that you’ve got to do this or our family falls apart. That’s number one, emergency trumps everything. If you believe you are in an emergency situation, immediately go to your county board of MR/DD and say I need help now. The other priorities are all on the same level, but they move in different times. If the parents, or primary caregiver, remember sometimes grandma and grandpa are sometimes the primary caregivers, if the primary caregiver is at least sixty years of age you get priority, so even if the son our daughter is five years old, if the primary caregiver is over sixty, you move ahead. Many families already on the waiting list are always calling me say well last year I was number five on the waiting list and now I’m number ten, how does that happen? Every time someone turns sixty in your county, they move forward, you move back. Most the families listening to this are probably under sixty, their children are probably younger, so they got on the waiting list later in life, that’s a top priority. If your son or daughter is already in a county board service, let’s say they attend a workshop, they are already out of school and they are attending the workshop, and the county is using one hundred percent local dollars to support your son or daughter in the workshop, they have the right to call you even though you have not been on the waiting list and said Mrs. Smith we would like to refinance your son or daughter. In state law the county has the right to do that, if they refinance me, today I’m on one hundred percent funded workshop and the county’s paying for all my transportation, let’s say the county is spending ten thousand dollars a year to support me in day service and to get me back and forth to the workshop. If they refinance me, that put me on a level one waiver, immediately the county only has to come up with four thousand or forty percent, and the federal government pays six thousand. And if I hadn’t qualified for Medicaid before, I now also get the Medicaid card because I’m on waiver. Everyone on a waiver has a Medicaid card they go hand and hand. The county just freed up six thousand dollars and now can use that six thousand dollars to serve someone else, so we have gone along and supported refinancing. So if the county calls you and you’re not on a waiting list, say yes. The other priority, and this is the priority category that most families with autism have been using, if you have a child they are under eighteen or over eighteen with intensive needs, you are also a priority. Intensive needs is described as behavioral or medical. You prove a behavioral intensive need with a behavior plan. So if your child has a behavior plan, they have an intensive need. Most of the time you have to present yourself to the county as having an intensive need, remembering there are over twenty thousand people waiting. Many of them are already over sixty, many of them are emergencies. It’s not often that someone is going to call you and say, hey, we’ve got a waiver for you. So you have to go and present yourself, and many counties will help you deal with that. But a child with intensive needs also gets priority. The other intensive needs is medical, so you have a child with autism whose behavior is O.K. but they also happen to have an uncontrolled seizure disorder, or they’re taking medication for mental health issues, that could be considered a medical intensive need. Especially if the seizures are not yet controlled, or manic behavior is there and it is not controlled either. So it’s emergency primary caregiver over sixty, refinancing, or that you have a child with an intensive need, and those all go first before the regular waiting list. So if you have a child with autism who’s not experiencing any behaviors, doesn’t have any medical issues, and you’re under sixty as the primary caregiver and there’s no emergency, you’re probably going to be waiting for a while.
The transitions waiver is something called a closed waiver, you can’t apply for it now, but there are thousands of children with autism on the transitions waiver. It’s the waiver administered by the Department of Job and Family Services. So those individuals on the transitions waiver have to have gone sometime in the last ten years to the office of Jobs and Family Services and where placed on, at that point it was called the homecare waiver, the homecare waiver was developed for children and adults with medical issues. Most the kids with autism don’t have medical issues any more then any other kid would have a medical issue, but the federal government came into the state of Ohio and audited us, looked at all the children and adults on the homecare waiver and saw thousands with autism and the federal government said Ohio I thought this was for kids with medical issues. So to protect those children, Ohio carved them out and created something called the transitions waiver. It’s now called the MR/DD transition waiver, because the plan was to sometime transition those children and adults, mostly children, to the MR/DD system. But the transitions waiver, like all the waivers, is a match with the federal government; the state of Ohio pays forty percent the federal government pays sixty. And that forty percent, just like the medical card, comes from the treasury, through the Department of Jobs and Family Services and we’ve never figured out how MR/DD will come up with the forty percent. If Jobs and Family Services has promised to if we transition these children to MR/DD their match will go with them, put as children age they become more expensive, so even if Jobs and Family Services promised forty cents on the dollar today, it will still be forty percent but it might two dollars tomorrow that we’ll need. Those children are fine, but they’re getting services that are different from children and adults on the IO or the level one waivers. Because the homecare waiver was originally set up for kids and adults that had medical issues, they waived an institution eligibility just like the other waivers, but their institutional eligibility was for a nursing home, not for an institution for people with mental retardation. If you think nursing home, you don’t go to a nursing home to improve your skills; you go to a nursing home to maintain your life. So, if my son our daughter is on the transition waiver and my neighbor is on the IO waiver and we’re comparing services, you have to keep that in the back of your mind, you’re getting a lot less service on the transition waiver then the IO. Because in the IO waiver the philosophy is you have a disability but you are continuing to learn and we’re going to help you learn more skills. On the homecare and transition waiver you’re being maintained, so it’s a very different model. The other issue that we’re advocating and fighting quite strongly for is that the transition doesn’t include day services. It does have a small amount of day services similar to what someone in a nursing home would have, but most of the children currently on the transitions waiver are seventeen and eighteen years of age, are in the process of transitioning and they don’t have anything to transition to at this point. Most of our county boards right now will accept them into their day programs, but the county will have to pay one hundred percent local dollars for their day program. And because the day program is outside the packages of services in your transition, you’re not guaranteed or entitled to those. Our fear as an advocacy organization is that individuals on the transition waiver will have the supports in-home that they need, but they won’t have anything to do during the day. Because most of them are still teenagers or in their early twenties, chances are their Mom or Dad are working outside of the home, so you may have in-home supports but after twenty two you’re not going to be in school and the chances are you may or may not have a day program. Job and Family Services has committed to us that they will add a day service to that commitment and that dialog has been going on for several years now. So, as with all of these waivers it requires not only knowledge of the funding stream but knowledge of who your state legislators are and how to advocate. The funding is tied directly to the services you get, the funding is tied directly to how quickly those waiting lists move. On the MR/DD side support the local levies, that’s how they move, on the Job and Family Services side which is the transitions waiver and Medicaid, get to know your state legislators because they have to allocate funds into the state treasury to pay for those services. From time to time various administrations have tried to cut Medicaid. Dental and vision for example are optional services under the Medicaid card. And we have repeatedly had to fight to keep dental services as part of Medicaid. We’ve had to have families, especially family with children that have autism and epilepsy who have had accidents and broken out their teeth, and sorry Medicaid didn’t cover it back then. It does cover is now, but because it’s an optional service it could come and go at any time.
Remembering that all the waivers I’ve talked about are for children and adults from birth to death. There are no age limitations on these and that there are over twenty thousand people waiting for the waivers, as soon as you know your child has a disability apply. You contact your county board of MR/DD, many counties will just accept a telephone call and put you on the list, if that’s your county follow it up with a letter saying this is to confirm that I requested a Medicaid waiver at this date, and it might even be good to put in a time if you’re living in a very populace county, there might be twenty other parents who applied the same day and on a waiting list somewhere down the road you may need to know that you applied at two o’clock and the other parent applied at three. But just document it. Some counties will ask you to fill out a form, it’s based on the county, your child will not be asset for the waiver until a waiver becomes available. So literally you could apply for a waiver when your child is five and not get the call until your child is fifteen or twenty, and they’re going to be functioning at a different level and there’s no way to tell, so you don’t have to qualify when you apply but you do apply at the county board of MR/DD and you do it as quickly as possible because the waiting lists are long and they’re getting longer.
There are two different types of appeal processes. You can file an administrative appeal through your county board, which would go to the superintendent, if you weren’t satisfied with your county superintendents response, you then would appeal to the Ohio director of MR/DD. If you’ve applied for a Medicaid waiver you file a due process appeal with the Department of Job and Family Services, it’s a toll free number 800-324-8680 that you call, and you need to know your son or daughter’s social security number, name, and you need to tell the individual what you were denied, whether it’s an IO waiver or a Level One waiver, it’s the same operator if you were denied a Job and Family Services Homecare waiver as well. Job and Family Services will schedule a hearing within a couple week’s, you’ll get a letter saying your hearing is at the local Job and Family Services office at this time. If you can’t make the hearing you need to call them immediately, because if you don’t show up you loose. And they will reschedule but unlike hearings in the school system, they’re not going to be meeting in the evening. They’ll work with you to establish a good hearing time, but you’ll probably have to take a day off work. The hearing will last probably less than a half an hour, you’ll be sworn in, the hearing officer will typically be over the telephone, I tell families you don’t need an attorney, if you call us (The ARC of Ohio) we’ll try to help you through the process. But always remember the burden of proof is on the county board or the Department of Job and Family Services for why they did not give you a waiver. You’ll need to do your background check and research, you’ll need to find out, and we’ll help you with this, whether there are waivers available anywhere in the system. We’ll ask you questions on whether you’re over sixty, whether your child has an intensive needs, to figure out if you’re one of those priorities. If you are, if you have a child with a behavior plan you’re automatically a priority and you’ll have to present evidence regarding that. You’ll have to get statements from your physician, psychologist, the school system, often times your caseworker, service and support administrator through the county board might be able to find some of that documentation. Knowing at the same time, people on the other side of the table will come with all of their evidence as to why they couldn’t give you a waiver. They cannot use money as an excuse, because they have already told the federal government that we had the money. The federal government will not give us waivers unless we have already proven that we have the forty percent match, and your county may not have it, but the state would have had to have said they’re the backup, the would have had to provide that. If you need help call The Arc of Ohio 800-875-2723 extension 114, that’s my extension it’s Gary, and I’ll try to help you through the process. I can’t always go to the hearings, there’s one of me and thousands and thousands of families that are trying to do that, put we’ll help through the process. I always encourage you to take a friend or family member with you, just like in the IEP process; it’s just nice to have someone hold your hand under the table to get through this. It’s not as scary a process, sometimes as an IEP or a special education due process. You will find out from the hearing officer within a month what their decision is. If they rule in your favor they’ll probably just rule that the county has to come out and do an assessment of your son or daughter, that will just be to determine whether they meet the level of care to qualify for the waiver. Remember when you applied for the waiver you didn’t have to meet the qualifications, you have to meet them at this point and someone will come out and do the assessment. The hearing officer will also ask the county and the state whether there are waivers available. If there are no waivers available in the system, you may win on principle, but if there are no waivers available there’s nothing for them to give you. If you lose in the hearing, if the hearing officer does not rule in your favor you have the right to appeal for an administrative ruling from the office of Job and Family Services, take that, sometimes not all hearing officers know all the rules and they may not make the decisions they should have. When it goes to the higher level sometimes decisions are reversed. You can also go to court, we’ve never seen anyone do that or win in that area so that’s a personal decision whether you want to do that or not. You’re not bound by one hearing, if you lose this hearing for example because there are no waivers available and waivers are released the next week and you’re again denied a waiver, appeal again, you can do it repeatedly. You don’t have to have written proof that you were denied, if you call the county and say I would like a waiver and the county says I’m sorry I thought I told you we don’t have any waivers, that’s enough. At that point appeal.
The best advice I can give families is stay in touch, if you’re listening to this video you’re already a family member that’s interested and wants to take part in the transition from childhood to adulthood. It’s challenging, we’ve found over the years that MR/DD doesn’t necessarily know what Jobs and Family Services is doing, Jobs and Family Services doesn’t necessarily know what education is doing. They’re all wonderful people, but we have a fractured system, it’s a good system, people in Ohio are great citizens, but the way our funding has developed over the years, it’s very silo’d. Special educators don’t know what’s available after graduation, partly because it keeps changing. The MR/DD field doesn’t know what education needs, and while you should be by law starting the transition process early in your teens, you really need to begin thinking of it as soon as you know you have a child with a disability. That doesn’t mean you stop dreaming, you still dream, my hope is that when you son or daughter graduates they not going to need MR/DD services, but we as families have to have that backup. Just like we would have with a son or daughter who was graduating and didn’t have a disability, we may plan for Princeton and Harvard and not financially be able to do that when our son or daughter gets there. Or maybe they academically aren’t going to get into Princeton or Harvard, but you still dream that. The services we’ve talked about in the waivers are just to help you along the way, and to be prepared; you always have to have that in your back pocket for your son or daughter. Many families that I talk to I explain the waiver process and the hearings and all that, and they immediately say well I probably don’t need that as much as that other person. You’ve got to make that decision on a local level. Most of us, and again if you’re listening to this, you’ve probably experienced in an IEP meeting, where someone has said if I give this to your child I’m not going to be able give this to other children, don’t ever let that get you down, you do what you’ve got to do for your child that day.