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Old 10-09-2017, 03:54 PM
 
Location: chicago
66 posts, read 68,734 times
Reputation: 209

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I'm speaking as an American but much of this should be open ended to be generalized.

So this is a thing I've been wanting to do forever now. and I know I'm not the only one. so many parents find themselves living in communities that they are not satisfied with (for as many different reasons as there are people) and they look into moving to another state.

For years I've researched this. Time and time again. I've researched this. So I have by now, a laundry list of reasons why I want to move that's been collecting.

I really want to move to Idaho. That has always been at the top of my list. However other states have caught my eye too as alternatives because of course, I have more than myself to think of. I've thought of all the things I need to consider and sometimes, those things cancel each other out or clash altogether. example would be, Idaho is my top choice but it might not be the best for a special needs parent due to financial limitations (because of limited research).

Now I'm at a good range for middle class with lots of working years ahead so I can potentially reach a household income of 100,000 per year. I'm just not very assertive so not sure if I'll get there. I'm in a field where I could potentially earn way more than that too. So I'm not overly worried on that despite not being where I want to be at right now. But one day I'll be dead. and I haven't a family that is going to look out after him, not because they stink but more situational. most of my family is overseas and I've never met. I can move to Ireland as a citizen but I would be more like a foreigner and that country is not where I want to be. so the thing is, what happens when I die? I want to move in a location and settle down and live out the rest of my life setting my kid up so he's not hurt or neglected.

I keep hearing I need to get him on a waiting list. I'm in Chicago and that's all I hear. but I don't want to be in Chicago when he's an adult! So what then? Own some property elsewhere for awhile so you're a resident and then get him on a waiting list there. okay, well still, what waiting list? It is not like these places advertise. Ideally I want him living in a community that is more like a farm or stable where they have a job or something. The adult living places here are so bad that the caseworker I had at one point, on her last day of the job, in no uncertain terms told me that the children group homes weren't that bad. it was the adult facilities that were heartbreaking. Not looking to linger on that note but the point stands. I don't want him here as an adult but how do I address this angle when future planning ?

Financial future planning is one thing right. and then, there is the planning to be in a state that has places where he can live when I'm gone and ideally, when I'm old where I can visit. I should mention that at this point in time I have him only on the weekends and he does stay at a children's home that isn't that bad. Not ideal. Not my preference. but it is okay for now. I do my best to fill him with activities during the week for quality life. and I facetime him every night which is adorable and fun and I'm working on getting him to type. but that may never happen so .. my planning is thwarted by the unknown which is a part of the autism package. I want to move to a new state and I can plan all I want and buy a home and invest and save but where is this waiting list? how do I see places? I thought to call some of these places but some wouldn't talk to me because I wasn't a resident of the state and others were not there anymore. the only list of places I could find was on the infamous autism speaks site and much of there data was outdated.

what has been your experience (personal or observed) ?

what are your future plans ?

how does one research options in another state for down the road ?

pretty much anything on the topic I'm way cool for because I have googled the crap out of this topic time and time again throughout the years and the only articles I find are all copying off each other. same outdated info and it appears everyone is just walking around with the same unanswered questions. I could be coming from the wrong angle however while googling but I set my default to be a wider net so what gives. why is this so hard ? this is the only angle of future planning that has me feeling completely defeated :/
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Old 10-11-2017, 07:26 AM
 
Location: Kansas
25,719 posts, read 21,880,574 times
Reputation: 26321
First of all, buying land in another state won't make you a resident there. Waiting lists are lists of people waiting to be served under the Medicaid waivers, and even private facilities that are good are most likely going to have waiting lists. Depending on the state, the lists can be more than a decade long with exceptions only for "crisis" cases. If you plan to fund privately, have a LOT of money to do this. A LOT!

We have been looking for residential for our son with Down syndrome for some time. I have looked at other states also. If I knew of a good state where I could get a "safe" environment, just that alone would cause me to relocate.

It looks like ID doesn't have a waiting list, at least at this time: Idaho Medicaid Waiver

Always keep in mind that things change over time, and it looks like you are looking pretty far into the future.
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Old 10-11-2017, 10:22 AM
 
Location: chicago
66 posts, read 68,734 times
Reputation: 209
Quote:
Originally Posted by AnywhereElse View Post
First of all, buying land in another state won't make you a resident there. Waiting lists are lists of people waiting to be served under the Medicaid waivers, and even private facilities that are good are most likely going to have waiting lists. Depending on the state, the lists can be more than a decade long with exceptions only for "crisis" cases. If you plan to fund privately, have a LOT of money to do this. A LOT!

We have been looking for residential for our son with Down syndrome for some time. I have looked at other states also. If I knew of a good state where I could get a "safe" environment, just that alone would cause me to relocate.

It looks like ID doesn't have a waiting list, at least at this time: Idaho Medicaid Waiver

Always keep in mind that things change over time, and it looks like you are looking pretty far into the future.
Thank you so much for responding!!! I was nervous I said to much and it would be ignored. I guess I am a planner type of person and do look far but that is just because of previous experiences have made me hyper sensitive to 'anticipating' I guess. I just bare the thought of the second half of this game being as painful as the first half.

so what did you google? what keywords ? how do you go about researching ? any tips ? I always struggle finding places public or private. all the medicaid state sites, sure .. but what if you want to visit these places ? actually any input on how the process has been for you would be fantastic. I struggle finding any guidance on this issue here. I've reached out to counselors and lawyers and neither seem to have access to some big book of places to check out.
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Old 11-16-2017, 10:13 PM
 
Location: Illinois
1 posts, read 1,268 times
Reputation: 10
Hi, we are in the Chicago area as well. Our son stays at Little City in Palatine and we also take him home every weekend. So you currently have the Medicaid Waiver in Illinois? Its a hard one to get on, since the list is well over 30k now. We don't think about moving out of state as it would mean starting all over again on a waiting list. We hope that someday when we retire, we can spend the winters in Florida and bring our son with us. We do like the summer, spring and fall in Chicago, its just those cold winters we would like to escape from someday.

DHS has plenty of info on state by state waiting lists and waiver info. I can take and let you know if I find anything.
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Old 11-18-2017, 07:06 AM
 
Location: Kansas
25,719 posts, read 21,880,574 times
Reputation: 26321
Sorry it has taken me awhile to get back to this thread. The two best states that I see are AZ and MI for Medicaid. Does that mean the programs are good for adults, no, the programs are only as good as the people running and working there. AZ and MI do not have waiting lists. There are a few others.

The problem is, you don't really know what something is like until you are living there and involved. The services could be great for my son and even in the same program not be so great for another resident. That is the problem.

I called NM last month hoping that it wasn't true that they had a 10+ year wait as there is a place there I would like to retire to. Nope, 10+ year wait. Most states, if not all, have the "crisis" funding for those that really find themselves in a bind when caring for their adult child.

It is always best to call the social services office and talk with the staff directly. Over a span of years or even a year, things can change which makes long term planning even more difficult.

I would try to narrow down the states I would be interested in and call them directly. You can also search out parent groups in the state, maybe sign up for their FB page and/or get on their email list.

I have been very annoyed by the funds shortage for people with developmental disabilities and the elderly and hope we can get back to serving Americans first.
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Old 01-08-2018, 05:42 AM
 
3,819 posts, read 9,425,484 times
Reputation: 5152
I have an adult son with autism here in Arizona. Do an internet search for adult autism in Phoenix and you will find a bunch of stuff. Phoenix is striving to be the most autism friendly big city in the country. Currently they are building an apartment complex a few blocks away from me designed and staffed to accommodate adults with autism and it's called First Place.
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Old 02-03-2018, 01:33 PM
 
Location: East Side
522 posts, read 712,692 times
Reputation: 615
Quote:
Originally Posted by AnywhereElse View Post
Sorry it has taken me awhile to get back to this thread. The two best states that I see are AZ and MI for Medicaid. Does that mean the programs are good for adults, no, the programs are only as good as the people running and working there. AZ and MI do not have waiting lists. There are a few others.

The problem is, you don't really know what something is like until you are living there and involved. The services could be great for my son and even in the same program not be so great for another resident. That is the problem.

I called NM last month hoping that it wasn't true that they had a 10+ year wait as there is a place there I would like to retire to. Nope, 10+ year wait. Most states, if not all, have the "crisis" funding for those that really find themselves in a bind when caring for their adult child.

It is always best to call the social services office and talk with the staff directly. Over a span of years or even a year, things can change which makes long term planning even more difficult.

I would try to narrow down the states I would be interested in and call them directly. You can also search out parent groups in the state, maybe sign up for their FB page and/or get on their email list.

I have been very annoyed by the funds shortage for people with developmental disabilities and the elderly and hope we can get back to serving Americans first.
I'm moving to AZ in the spring and my son is 14 with autism. He is in NH right now but will someday be with me in AZ so that is good to know. Thanks!
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Old 02-03-2018, 01:36 PM
 
Location: East Side
522 posts, read 712,692 times
Reputation: 615
Quote:
Originally Posted by grmi66 View Post
I have an adult son with autism here in Arizona. Do an internet search for adult autism in Phoenix and you will find a bunch of stuff. Phoenix is striving to be the most autism friendly big city in the country. Currently they are building an apartment complex a few blocks away from me designed and staffed to accommodate adults with autism and it's called First Place.
Great information thanks!
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Old 02-03-2018, 04:38 PM
 
Location: Middle America
37,409 posts, read 53,366,115 times
Reputation: 53066
Quote:
Originally Posted by testing_waters View Post
...okay, well still, what waiting list? It is not like these places advertise. Ideally I want him living in a community that is more like a farm or stable where they have a job or something. The adult living places here are so bad that the caseworker I had at one point, on her last day of the job, in no uncertain terms told me that the children group homes weren't that bad. it was the adult facilities that were heartbreaking. Not looking to linger on that note but the point stands. I don't want him here as an adult but how do I address this angle when future planning ?
If you are still in the Chicago area, you might check out Lambs Farm in Lake Co. It was developed as both a residence and vocational site for the developmentally disabled and has a working farm, wildlife center, restaurant cafe and bakery. It is in rural Libertyville, near Lake Bluff.
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