bethben Posted May 7, 2014 Share Posted May 7, 2014 My 15 year old son has severe developmental and physical disabilities. We are currently in a state (Minnesota) that offers decent support now and as he ages. The problem is, my husband needs a new job and we need to move to be closer to a metro area so he can stop commuting so far. We would like to live in a warmer state that doesn't have harsh winters because ice and wheelchairs is not a good thing. The problem is state support. The range is extreme. The thing we're mostly looking for is help with long term care. We are getting older and know there will be a day we can no longer care for him physically. We aren't even saving up for retirement at this point, much less long term care. We have planned at this point to have him stay at home, but if we can't afford to hire people out of pocket ourselves, how will we do it? For those of you who live with little to no state support, what are your plans for the future of your child as they age? Beth Quote Link to comment Share on other sites More sharing options...
bettyandbob Posted May 7, 2014 Share Posted May 7, 2014 I have a 12 yo I expect to support for a lifetime. I live in a terrible state for support and cannot move. I, for some reason am not able to cut and paste. Google search state rankings of disability services. You will see Arizona ranks the highest. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted May 7, 2014 Share Posted May 7, 2014 We are in Michigan and have decent supports but lots of snow and ice and no jobs. Quote Link to comment Share on other sites More sharing options...
bettyandbob Posted May 7, 2014 Share Posted May 7, 2014 I'm now at a computer where I can paste a link http://www.ucp.org/the-case-for-inclusion/2013/ yay for my family, my state is ranked 47th. I personally would like to live near a warm beach, so I'd love to be in southern CA, but dh wouldn't go for that. He'd like one of the states in the northeast. We don't have the income, savings or possibility of jobs elsewhere so no move will happen. The map can give you ideas of states to target for research. The article highlights some details. Quote Link to comment Share on other sites More sharing options...
chiguirre Posted May 7, 2014 Share Posted May 7, 2014 For those of you who live with little to no state support, what are your plans for the future of your child as they age? TBH, I suspect he'll end up in the criminal justice system. He's big, he's scary, it wouldn't take much for someone to call the police. All of the lovely residential facilities specify "not a danger to self or others" and that's true of GW 99.5% of the time, but eventually he'll have an outburst. It's very depressing and there's not much help in planning a transition to a state operated secure residential facility. In fact, the school district's transition person looked at me like I had two heads when I asked about how to get ds into a state school. It's bad enough to be facing this reality, but we can't be the first family that's had to walk this road. I'd like a little guidance without the professionals treating us like lepers because GW can't live in the community. I know that's their goal, but it's not a realistic one for everyone and I want him to be safe. The whole thing is a huge worry. OP, I know you've got slightly different concerns, but I appreciate the opportunity to vent and commiserate. Quote Link to comment Share on other sites More sharing options...
bethben Posted May 7, 2014 Author Share Posted May 7, 2014 When I've looked at residential programs that are run by non-profits and seem to be better managed, a lot of them will say their potential clients need to be continent and able to walk. So once again, we get limited by disability. I've been feeling pretty hopeless lately. I don't think a lot of people see how totally horrible a disability can really be when you're looking at long term care. A lot of the very disabled are hidden because its just plain hard to get them out of the house. I have a couple of friends whose children only leave the house to go to the doctor. Beth Quote Link to comment Share on other sites More sharing options...
Ali in OR Posted May 7, 2014 Share Posted May 7, 2014 We haven't had the transition to adulthood yet, but from what I'm hearing, we're going to have good support here in Oregon. Thanks for the UCP link...looks like Oregon is 3rd in the nation! We'll have dd live with us for the foreseeable future, but sometime before we have hit the limit of what we handle, we can look at residential care opportunities. Our county case worker has a disabled adult son now living in a group home--she makes it sound really positive for everyone concerned. We also have excellent support now while she is a minor. She's been in a state program for medically-involved kiddos that provides us with respite care, she got medicaid (no more copays, free diapers), and they help with other supplies for her care. Even helped with the conversion cost for our modified van. Our winters are fairly mild. We did get some snow this year--she just stays inside on those rare days (they cancel school for snow here--the whole town is incapacitated. We don't get much usually). Quote Link to comment Share on other sites More sharing options...
bethben Posted May 7, 2014 Author Share Posted May 7, 2014 We have similar now as to what you describe in Oregon. Part of Minnesota's wackiness is that it really depends on what county you live in. Some counties are like Cadilacs, some are like Yugos. We really want to be closer to my immediate family. We can't because Illinois has no services. I almost cried when I was talking to an A.R.C. person there. She basically told me there's no shame in eating cereal for dinner i.e you will be financially poor in order to pay for the services your son needs. We figured that in order to live there and survive, my husband would have to make double his current salary so we could live at the same level we are now and use the other half to pay for my son's current and future needs. I told my mom who lives in Illinois that if she sees someone with a child in a wheelchair to give them all the money in her wallet because they most likely need it. Beth Quote Link to comment Share on other sites More sharing options...
Alessandra Posted May 7, 2014 Share Posted May 7, 2014 I'm now at a computer where I can paste a link http://www.ucp.org/the-case-for-inclusion/2013/ yay for my family, my state is ranked 47th. I personally would like to live near a warm beach, so I'd love to be in southern CA, but dh wouldn't go for that. He'd like one of the states in the northeast. We don't have the income, savings or possibility of jobs elsewhere so no move will happen. The map can give you ideas of states to target for research. The article highlights some details. The map shows NJ in the bottom 10. In general the feeling is that NJ is great under 21, not good after 21. It will likely get worse as a number of residential centers in the north of the state are closing. Plans are to move residents to institutions in the southern part of the state, hours away from aging parents. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted May 8, 2014 Share Posted May 8, 2014 {{{{hugs}}}} and prayers. I truly wish that I could do more than that. Quote Link to comment Share on other sites More sharing options...
LostSurprise Posted May 8, 2014 Share Posted May 8, 2014 Sorry, no ideas here. Can you reach out to a statewide children/adults with special needs organization and see if they have some ideas? Sometimes they are aware of other state organizations or federal information you can research. For anecdotal stuff I find that parent organizations for your specific diagnosis can be helpful. Lots of inside info. (although you have to take things with a grain of salt...sometimes things that look good on paper don't work out well in reality...Arizona is high on the linked list and Illinois low, a bit ironic because someone in my group finally moved back to IL from AZ. She had too many problems with poor institutional care in AZ...at least with our diagnosis). I wish you the best. We're looking at Special Needs Trusts right now, but I doubt we'll get much rolling until the other boys are out of school. Quote Link to comment Share on other sites More sharing options...
JFSinIL Posted May 8, 2014 Share Posted May 8, 2014 I am wishing we could get OUT of Illinois. My 22-year-old son will never leave home and unless we can fund it, there is no programming for him here. Quote Link to comment Share on other sites More sharing options...
bethben Posted May 9, 2014 Author Share Posted May 9, 2014 I live in Minnesota which is ranked 31 on the list. I can't imagine what a #1 rating would be. I have never lacked for any service here that I can think of. We have been able to hire help, pay for medical equipment not covered by insurance, and paid for adaptations to our home and van. I find more information talking to state's social workers and disability advocates than anything else. For example, in Illinois, the social worker plainly told me there are no services. A social worker in Wisconsin on the other hand guided me to several programs that would fit my son's diagnosis whose only hurdle for us was to establish residency. Sure, in Minnesota, my son has been on a waiting list for a waiver for 14 years. I have no idea what that waiver would cover since the waiting list is so long. Maybe that's why Minnesota ranked lower? I haven't missed it. My husband is looking at jobs that fit his qualifications in states that aren't the "stay away from here" states like Illinois, Iowa, Texas, ect. The others, I just know I'm going to have to talk to people who qualify people for these programs and see what they are really like. I never worry about qualifying for anything. Unfortunately, one 10 second look at my son screams, "He qualifies". I have people who ask me why don't we just move away from our small town and move closer to Minneapolis and St. Paul? They're in a different weather system (40 miles away) and the winter weather/cold/ice/never see spring is only worse up there. My friend across the street homeschools her daughter. She has a chart for the seasons. November through April is winter, May is spring, June- August is summer, and September and October are fall. It's true too! Her pie graph of the seasons makes me laugh. Beth Quote Link to comment Share on other sites More sharing options...
bethben Posted May 14, 2014 Author Share Posted May 14, 2014 Update: I used the list of state rankings and I'd like to say, "IT IS NOT ACCURATE!!!!". My husband found a job in Michigan that he was thinking about. Michigan is rated in the top 5. THEY HAVE NO SERVICES!!!! According to social services near Grand Rapids, they have a waiting list we are welcome to join and wait on the list for a few years for any type of service. Minnesota in the middle of the pack has at least what I would call minimal services without having to wait for them. By calling social services and advocacy groups in other states, we are now "advised not to come here/ proceed with great caution" by Colorado, Michigan, Tennessee, Texas, and Illinois. South Carolina was somewhat promising, but dh doesn't want to move there due to lack of metro areas. I think we are staying put right now. It really grieves me. Something is better than nothing. Beth Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted May 14, 2014 Share Posted May 14, 2014 I'm sorry. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted May 14, 2014 Share Posted May 14, 2014 Update: I used the list of state rankings and I'd like to say, "IT IS NOT ACCURATE!!!!". My husband found a job in Michigan that he was thinking about. Michigan is rated in the top 5. THEY HAVE NO SERVICES!!!! According to social services near Grand Rapids, they have a waiting list we are welcome to join and wait on the list for a few years for any type of service. Minnesota in the middle of the pack has at least what I would call minimal services without having to wait for them. By calling social services and advocacy groups in other states, we are now "advised not to come here/ proceed with great caution" by Colorado, Michigan, Tennessee, Texas, and Illinois. South Carolina was somewhat promising, but dh doesn't want to move there due to lack of metro areas. I think we are staying put right now. It really grieves me. Something is better than nothing. Beth What type of services are you looking for? We are in West Michigan (but different county than GR) and we have had great services for all 3 of my special needs kids. Quote Link to comment Share on other sites More sharing options...
idnib Posted May 15, 2014 Share Posted May 15, 2014 I don't have any advice but :grouphug: . The Oregon situation sounds nice.... Quote Link to comment Share on other sites More sharing options...
bethben Posted May 15, 2014 Author Share Posted May 15, 2014 What I consider basic services is Medicade type payments of co-pays and adult diapers and respite type service. We could in theory tough it out until he turns 18, but we are concerned for his long term care as we age. We'd be looking for people to help take care of him in our home and/or adult day care. I was told by the Grand Rapids ARC person that the services are there, but there's a waiting list. I couldn't actually get any social services people on the line. There's also the thing about Michigan having more than snow than we get up here. I really don't know if I can handle that. I could really use one less barrier in my life. Beth Quote Link to comment Share on other sites More sharing options...
Ottakee Posted May 15, 2014 Share Posted May 15, 2014 What I consider basic services is Medicade type payments of co-pays and adult diapers and respite type service. We could in theory tough it out until he turns 18, but we are concerned for his long term care as we age. We'd be looking for people to help take care of him in our home and/or adult day care. I was told by the Grand Rapids ARC person that the services are there, but there's a waiting list. I couldn't actually get any social services people on the line. There's also the thing about Michigan having more than snow than we get up here. I really don't know if I can handle that. I could really use one less barrier in my life. Beth You might try Ottawa County for services. You could easily drive from Ottawa County to GR for a job. We don't need adult diapers but for several years we got diapers for our 3-7 year old through Medicaid. All 3 of my kids get respite services through Medicaid/Community Mental Health and that will also cover summer camps if we want. There are several sheltered workshops/day programs/etc. for adults with special needs---all the way down to those that are non verbal and total care. These include transportation as well. In Ottawa County, the Ottawa Area Center is VERY good for kids/young adults up to age 26 with special needs and they even offer a 4-6 week summer school program with lots of outside/field trip activities. We do have snow. This year was record cold and snow. Quote Link to comment Share on other sites More sharing options...
ElizabethB Posted May 15, 2014 Share Posted May 15, 2014 :grouphug: In Arkansas, a boy in my daughter's AWANA class had an older brother with Down's syndrome, his older brother was in the class, too, to be with his brother, although he was not capable of doing many of the activities, he did what he could. Younger brother said that any girl that married him was going to have to know in advance that they would be supporting and living with his brother, too. He was a great kid!! Mom was widowed, so no funds to save, sadly. Quote Link to comment Share on other sites More sharing options...
FaithManor Posted May 15, 2014 Share Posted May 15, 2014 Update: I used the list of state rankings and I'd like to say, "IT IS NOT ACCURATE!!!!". My husband found a job in Michigan that he was thinking about. Michigan is rated in the top 5. THEY HAVE NO SERVICES!!!! According to social services near Grand Rapids, they have a waiting list we are welcome to join and wait on the list for a few years for any type of service. Minnesota in the middle of the pack has at least what I would call minimal services without having to wait for them. By calling social services and advocacy groups in other states, we are now "advised not to come here/ proceed with great caution" by Colorado, Michigan, Tennessee, Texas, and Illinois. South Carolina was somewhat promising, but dh doesn't want to move there due to lack of metro areas. I think we are staying put right now. It really grieves me. Something is better than nothing. Beth Michigan used to have AMAZING services, really, really good, before the previous governor cut them to the bone for her pet projects and now that the real estate boon and manufacturing losses have caused great hardships, those programs have never rebounded. Sorry, if you could afford it, I would recommend a place called "The Lighthouse" in Caro, MI or Traverse City. They specialize in special needs people with neurological issues and have expanded some of their facilities to include profoundly disabled. They treat their patients like royalty and are generally very, very good to the families. However, I think it's pretty expensive. That said, they do have adults with severe autism and I have to wonder without an insurance pay out for accident such as car wreck and such, this is being paid for by a lot of families. Hmmmm....I'll check it out. That said, I'm not certain what you'd find for jobs near the Caro facility though the cost of living is dirt cheap. The Traverse facility is newer so I'd need to see if they provide the same level of care or if they are still working with less disabled individuals. They do have both outpatient and inpatient facilities. http://www.lighthouserehab.com/ Quote Link to comment Share on other sites More sharing options...
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