A person over 18 can access SSI with an adaptive score under 70. Many ASD kids, even those with superior IQ's, get scores of 70 and below quite easily. He will need a Vineland II. You will now have to pay for it. Schools give it, but the are not necessarily required to give it when the student is in striking distance of adulthood. I plan on asking for hit this year, when my son will be 16. He's had it before and scores around 60, eventhough his IQ, while not high, is average (92). Get the Vineland II now and get your son qualified.
I am considering hiring a lawyer who specializes in Transition to take my District to task. Often, we can only get for our kids what they think we'll take them to Due Process over once they get to High School age. They are happy to let our kids mark time until they age out.
Good luck on getting some adult services.
thanks for your support. i am very concerned about what will happen to all these other children as each year goes by there are more and more autistic children turning into adults. we have not prepared for this. no one seems to know or care about what happens to them. they are left to sit at home with mom and dad. i did not fight for best placement and go through all these problems with transportation etc only to get here, no where.OH this is so disheartening. I am so sorry. You are so right though. This really needs to be addressed NOW! It should have been dealt with years ago so that you wouldn't have to be dealing with this.
Karrie
I am so sorry to hear this! My son just turned 11 yo and already these types of circumstances concern me. This needs to be addressed YESTERDAY!!!! I wonder if there isn't a way that the ASA can assist.
PS. I'm not sure what a "Vineland II is though?????
Keep making inquiries and talking to people. Someone might know something. I hope you figure out something soon. My son is 5 now. I know how panicked I was trying to get him services on time. I hope all these recent publicity about autism makes decision makers more sensitive to the situation and act more quickly. My heart goes out to you.
concernedpa.
toyza my son has had a vineland assessment. doesn't really matter what the scores are. the problem is money and waiting lists. most of the kids from his school that graduated last year are still on waiting lists at home with parents. doesn't matter what sort of plan you have either. they tell you state only has so much money so only the emergencies get the money. in the whole state of pa there is only enough money for 50 people to receive autism waiver. still in midst of applying for waiver for mr which by the way gives you more money than autism waiver if you get it. once i apply have to contact legislators and try to get it pushed through. his school very up on getting you ready for transition but i still feel like i have been blinsighted. don't get you ready for the reality of whole system. system very cold and uncaring. you think school districts are bad. my friend on autism task force in pa and her son is one of the kids sitting at home. can get no waiver for him, he works two hours a week cutting vegetables at a local restaurant. he tested over 70 and still on waiting list for autism waiver for about a year. when i stress that my husband or i will have to quit our job to care for my son at home they do not care. pushing for us to put him into group home but then there is waiting list for that too. there are just too many people going into the system and only the worst off get the money. my son getting ssi already. if you test over 70 in pa then you go through your ovr to see if they can find your child a job, many autistics do not qualify for the types of jobs they have and have to wait at home for something to open up. if you test under 70 you can qualify for a waiver up to 22,000 in pa to recieve services such as sheltered workshop or supported employment, day care , or group home. have to apply for waiver and then wait on list until you are the most emergent. after you get the waiver you must then go on list for the service that you are requiring. you can apply for waiver before turning 21 but will be turned down because you are still in school. sons case manager told me he is just now receiving waivers for some of his clients that graduated last year but they are in worse circumstances than my son ie only one parent or a sick parent etc.Our old speech therapist Jane Giddan told me of a place called Bittersweet farms in Ohio; she and her husband were on the board of directors..even wrote a book about it. It looks really nice for adults with autism. She is now in Texas and retired from being a professor there and has written several books on helping communication with autistic adults..She is wonderful and has spent her whole life dedicated to helping people with autism..mainly adults. Her husband I believe is a psychologist and wrote a book on autism as well:) I put the link below for everyone to check it out. I have no more information than this so getting into it will have to be up you:) I love the ideal of living on a farm with indoor pool and activities and work and play with professionals that understand autism. They surely needs to be more facilities like this one.
http://www.bittersweetfarms.org/
Shelley, there's a farm down here in NC, too - managed by TEACCH. They also run a bakery. The sell the surplus produce at the Farmer's Marker. Doesn't sound like a bad life, actually! I wouldn't mind living/working on a farm!yes we do have a meeting with ovr planned middle of feb. only problem is my son low functioning and not able to work with out job coach. ovr will not keep you on rolls for unplanned length of time. must think person will be able to go on their own after a while. no expectation of that with my son. he is getting ssi. it really isn't a money issue. don't care if he makes money. just would like him to have something constructive to do and not sit around all day. can not even think that i must spend the rest of my life planning things for him to do. would be happy if he could get into a sheltered workshop type of deal but needs waiver for this. there are social workers out there to help with this, they are your case managers at your base service unit. our case manager about 22 and not aware of a lot and i am telling him things. the whole system stinks.just thought i would post on what we have been going through. my son turning 21 and aging out of educational system. have had transiton plan in effect since age 14 but it doesn't really matter. can't do anything in pa until child turns 21 and then you get to fill out reams of paper work to get put on a list. everything is lists. get put on list as either emergency or critical level. if at critical level get no services or waiver. if at emergency level may get waiver and service but have to wait on list which is very long. was told by case manager the other day that since there are two parents to care for the individual would probably never get waiver. which means if i want to continue working i need to pay for adult day care or find a workshop and pay myself for it which is very expensive, over 125 dollars a day. don't make that much money a day. which means after all these years of educating my child he sits at home. know you are all dealing with day to day issues with young children but need ot think about what will happen after school and get on your legislators to do something about this crisis. pa now has and autism waiver but you can not apply for it if the individual has an iq under 70. even then you still need to get on the list for it.
My heart goes out to you and your son.
I totally agree about pressuring legislators to acknowledge and seriously address this problem. My son is almost 5. Yours is about 15 years older. If you have to get on a list NOW, what happens to my child and the thousands of others in 10-15-20 years?! This is not only a personal crisis, it's a crisis of our country's future. I'm in USA, but also Canada, UK, Australia, etc.
God Bless, and I hope you can work something out for your child!
yes have heard about the farms in other states and do sound lovely. a group of friends did try here in pa to set up a farm arrangement but it went belly up. too much money to get it started and too many legal problems. would be an ideal situation. right now waiting on our meeting with ovr and are waiting to see if waiver goes through. Hi col845:I'm planning on living forever. Do I have any other choice ... sigh ....
My brain is unable to process her in this kind of system that cares so little and provide less than nothing for parents to feel good about. Too sad to think about. Shouldn't they have social workers helping in this area before kids get out of high school it just doesn't make sense. I will have to live forever too
Blessings,
Shelley
Norway could do a lot better with early intervention and therapy for autistic children, but at least the situation for adults is pretty okay. In our small commuter town there's a couple group apartments and a sheltered workshop/club. When I drive my husband to the train station, I see a few mentally handicapped adults walking to their club, some of them hand in hand. It's heartwarming.
However, these types of programs are so vulnerable, both to budget cuts and to poorly trained, overworked, or simply cold-hearted personnel. On the front page of the newspaper one day last year there was a heartwrending picture of an autistic young adult who had been traumatized by his living situation.
His housemates (most of them retarded) overloaded his senses and caused him anxiety. This anxiety built up over a long period without the staff making the parents aware of it. The anxiety then got totally out of control when his parents went on a long vacation (the staff had assured them that he was in good hands). When they came back from vacation, he had regressed to the point of lying in a fetal position not talking, had lost a lot of weight, and was back in a diaper (which he hadn't used since age 6).
Needless to say, they had to take him home for a loooong period before finding him a different living situation. If they even mentioned the word "apartment", he'd totally panic. Once he even tried to jump out of a moving car when the word apartment was used in a conversation.
Sorry to make it such a downer, but even if our kids get to the top of the list, they unfortunately still need loved ones to follow up with them and fight for them if necessary.
Good luck to everyone.
I am faced with this in the more immediate future since my son is going to be 16 this Monday and DH is 60 and I'm 57. We have no close family members. NY allows families to come up with unorthodox plans and, right now, we're planning to leave our house to our son to live in. Since the state won't be responsible for putting a roof over his head, they are willing to spend extra money on workers to help him out here. We own 2 very small homes. One we live in that is near public transportation and is the only home DS has ever known. The other is about 15 miles away and in the woods, not near anything. As DS gets older, we may decide to no longer rent the other house to tenants so that DH and I can move there ourselves. DS can then live here with a worker. I foresee doing this in about 15 years, as DH and I are entering later old age and DS is fully an adult and settled in whatever job he is going to get, hopefully using the bus system in our neighborhood. Both houses are already paid for (remember, DH and I are OLD and SHOULD have houses paid for by now). I envision getting my son a roommate (another disabled young adult) who pays rent (through the state) so that my son will have companionship and the rent can cover the utilities. The taxes will be paid for by DH and me until we die. Then the other house will be sold and the proceeds put into a trust to pay for the taxes on the house my son lives in until he dies. The house can then go to his heirs, if there are any. We can make provision for a reverse mortgage on the house he's living in once he gets to the advanced age at which he would qualify for a reverse mortgage, should he need more $$$ by then. Any money from us would be in the trust and could be used for expense over and above what he can pay for himself. My neices would be the trustees and guardians. I can trust them. My son's job income and disability checks would pay for the day to day expenses and fun. What I am SECRETLY hoping is that he eventually meets a developmentally disabled young woman and they fall in love. I really want him to marry, though he would be incapable of raising children. I just want SOMEONE there to give him love and physical affection. He has no siblings and is not that close to the very few relative we do have outside our tiny nuclear family. Anyway, that's our plan. Of course, life is what happens while we're busy making plans, so we'll see.[BLEEP] I hate lists.
I feel for you. Lists lists lists lists lists.
They're use-list!
I live in Canada with a public health care system, but I try to go private when I can afford it. My husband has decent insurance.