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lightblue
LIF Adult
Member since 1/17 2249 total posts
Name:
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Does anyone feel "stuck" geographically because of services?
So I was starting to think as a spinoff of the "do you like living on LI" thread on the FHF page. Does anyone else feel like they are "stuck" here because of the availability of services vs. other parts of the country? I always dreamed of moving to a place where the cost of living is lower, the weather is nicer, but I feel like I can't because my son will most likely need services into adulthood, and I have heard horrible things about the availability of services in states where COL is cheaper....
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Posted 11/7/18 4:19 PM  |
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Does anyone feel
I’m going to be totally blunt... I work in this field and the services for adults are barely existent at this point, I wouldn’t let that deter you. Residential placement is a non option unless your child currently has placement, there’s not such thing as prevocational services, eventually the goal is that everyone have self direction, self direction is available in most states
Message edited 11/7/2018 7:44:30 PM.
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| Posted 11/7/18 7:43 PM |
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Aries14
Can't plan life...
Member since 8/08 2860 total posts
Name:
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Does anyone feel
I do for the elementary level though. My DD receives a lot of services that when I talk to family members from out of state they can't believe the resources we are getting.
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| Posted 11/8/18 11:07 AM |
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jamnmore
LIF Adult
Member since 6/16 989 total posts
Name:
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Does anyone feel
Yes. We want to move but everyone we talk to tells us we won't have the availability for austism services that we have here. So for now we stay. We hope that with ABA and a lot of work the need for services will reduce and eventually we will feel comfortable enough to move. It would be awesome if service was approved on a federal level but overseen on a state level so you did not need to start the process all over in another state.
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| Posted 11/8/18 1:56 PM |
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LInMI
LIF Adult
Member since 7/10 1800 total posts
Name:
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Re: Does anyone feel "stuck" geographically because of services?
NO!! If anything I wish I lived out of state. I originally had the same ideology. I thought NY has to have the best of all services (being an affluent area, suburb of NYC, etc). After doing research and being on all these FB support groups... it's amazing what this state (and area) is lacking! I'm even thinking about going down to Alabama (out of all places  ) this summer for an evaluation/ therapy for my LO. So sad!!
Don't let the "NY state of mind" hold you back.
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| Posted 11/8/18 3:57 PM |
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Re: Does anyone feel "stuck" geographically because of services?
Posted by LInMI
NO!! If anything I wish I lived out of state. I originally had the same ideology. I thought NY has to have the best of all services (being an affluent area, suburb of NYC, etc). After doing research and being on all these FB support groups... it's amazing what this state (and area) is lacking! I'm even thinking about going down to Alabama (out of all places ) this summer for an evaluation/ therapy for my LO. So sad!!
Don't let the "NY state of mind" hold you back.
Interesting, my SO's son is in NJ and what we have to fight for him and what they consider services is ridiculous compared to what my son got in NYC (for "lesser" classifications)
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| Posted 11/8/18 4:30 PM |
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Diane
Hope is Contagious....catch it
Member since 5/05 30683 total posts
Name:
D
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Re: Does anyone feel "stuck" geographically because of services?
YES!!!!
Now that we just got approved for self-direction through OPWDD, my son will get so much I cant get anywhere else. PLus I am a teacher, so I cant leave yet.
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| Posted 11/9/18 7:36 AM |
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lightblue
LIF Adult
Member since 1/17 2249 total posts
Name:
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Re: Does anyone feel "stuck" geographically because of services?
Posted by TwinMommyToBoys
I’m going to be totally blunt... I work in this field and the services for adults are barely existent at this point, I wouldn’t let that deter you. Residential placement is a non option unless your child currently has placement, there’s not such thing as prevocational services, eventually the goal is that everyone have self direction, self direction is available in most states
Oh wow really? I joined a few FB groups of parents with autism living in other states. SC would be my top choice of states to move to. However when I spoke to an autism parent from there she said basically not to move there because everything is a waiting list. Her son was 26 and number 7,000 on the list for just medicaid....
Right now he is getting OK services in school but I guess I am just thinking long term like if he would ever need residential placement.
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| Posted 11/9/18 3:17 PM |
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lightblue
LIF Adult
Member since 1/17 2249 total posts
Name:
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Re: Does anyone feel "stuck" geographically because of services?
Posted by Diane
YES!!!!
Now that we just got approved for self-direction through OPWDD, my son will get so much I cant get anywhere else. PLus I am a teacher, so I cant leave yet.
Congrats on the self-direction approval!
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| Posted 11/9/18 3:17 PM |
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lightblue
LIF Adult
Member since 1/17 2249 total posts
Name:
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Re: Does anyone feel "stuck" geographically because of services?
Posted by LInMI
NO!! If anything I wish I lived out of state. I originally had the same ideology. I thought NY has to have the best of all services (being an affluent area, suburb of NYC, etc). After doing research and being on all these FB support groups... it's amazing what this state (and area) is lacking! I'm even thinking about going down to Alabama (out of all places ) this summer for an evaluation/ therapy for my LO. So sad!!
Don't let the "NY state of mind" hold you back.
Which states did you find had more to offer?
The only one I have heard of that people were happy with is Pennsylvania... not extremely cheap but cheaper than NY.
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| Posted 11/9/18 3:19 PM |
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Diane
Hope is Contagious....catch it
Member since 5/05 30683 total posts
Name:
D
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Re: Does anyone feel "stuck" geographically because of services?
Posted by lightblue
Posted by Diane
YES!!!!
Now that we just got approved for self-direction through OPWDD, my son will get so much I cant get anywhere else. PLus I am a teacher, so I cant leave yet.
Congrats on the self-direction approval!
Thank you....what a long process, but well worth it
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| Posted 11/9/18 7:01 PM |
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Re: Does anyone feel "stuck" geographically because of services?
Posted by lightblue
Posted by TwinMommyToBoys
I’m going to be totally blunt... I work in this field and the services for adults are barely existent at this point, I wouldn’t let that deter you. Residential placement is a non option unless your child currently has placement, there’s not such thing as prevocational services, eventually the goal is that everyone have self direction, self direction is available in most states
Oh wow really? I joined a few FB groups of parents with autism living in other states. SC would be my top choice of states to move to. However when I spoke to an autism parent from there she said basically not to move there because everything is a waiting list. Her son was 26 and number 7,000 on the list for just medicaid....
Right now he is getting OK services in school but I guess I am just thinking long term like if he would ever need residential placement.
Yeah the reality is, services are so limited in adulthood, it’s a shock to most parents when we do transition to adulthood and we often have very upset parents when they realize their child won’t have residential, a job, and all clinical services directly out of school. Some services are available, limited choices and it’s certainly not getting any better, I’m actually burnt out from working in the field because we are barely sustaining mediocre care at best and I work for one of the “top” service providers on Long Island
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| Posted 11/9/18 7:45 PM |
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LSP2005
Bunny kisses are so cute!
Member since 5/05 19458 total posts
Name:
L
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Re: Does anyone feel "stuck" geographically because of services?
My friends whose children have autism signed them up to have potential residential housing when they were about 3 years old and told that they should qualify at 25. If you think you want that as an option, I would look into those housing options now for the future now. I would also speak with an attorney about establishing a special needs trust so that their finances are taken care of and you can get them into the residential housing.
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| Posted 11/9/18 9:47 PM |
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Re: Does anyone feel "stuck" geographically because of services?
Posted by LSP2005
My friends whose children have autism signed them up to have potential residential housing when they were about 3 years old and told that they should qualify at 25. If you think you want that as an option, I would look into those housing options now for the future now. I would also speak with an attorney about establishing a special needs trust so that their finances are taken care of and you can get them into the residential housing.
Not necessarily true. Placement is sometimes upstate our out of state and then during adulthood the “child” would come back for age out housing that would continue as an adult. Placement as a child isn’t a guarantee. There needs to be a reason why the child cannot live with their family. We turn away hundreds of kids a year because there just isn’t housing availability. Signing them up at 3, they will not get placement at 25. Housing is available for children aging out of residential settings OR a priority 1, meaning they are in crisis at home and the family cannot care for the person
Message edited 11/9/2018 9:54:48 PM.
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| Posted 11/9/18 9:53 PM |
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Dolphinsbaby
My 3 little guys!
Member since 12/10 2943 total posts
Name:
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Re: Does anyone feel "stuck" geographically because of services?
Yes! I hear you. We are in Queens, but same boat. All of our life decisions are all made around our son with autism. We have 2 others but I don’t know what we will do when they all grow up. DH hopes one of his brothers will take care of him but I tell him that is really not fair. Who knows where they will be? They may live out of state, they may be married. Their wife may not want that, etc. Its so hard. This is so different than what I imagined life would be like with 3 little kids.
Message edited 11/10/2018 9:20:54 PM.
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| Posted 11/10/18 9:20 PM |
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lightblue
LIF Adult
Member since 1/17 2249 total posts
Name:
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Re: Does anyone feel "stuck" geographically because of services?
Posted by LSP2005
My friends whose children have autism signed them up to have potential residential housing when they were about 3 years old and told that they should qualify at 25. If you think you want that as an option, I would look into those housing options now for the future now. I would also speak with an attorney about establishing a special needs trust so that their finances are taken care of and you can get them into the residential housing.
Thank you. Strangely enough we were denied medicaid when I first applied (he was 4 at the time) and I am going to try again when I have to apply for permanent OPWDD eligibility when he is 7 going on 8 (he just turned 6 this past August). I think I need medicaid first to even be on any list. I would be surprised if he gets denied again because he is considered severe on the Autism spectrum, non verbal, and also diagnosed with intellectual disability.
I did see a lawyer and set up a special needs trust that takes effect when we both pass. We also purchased a whole-life policy that will fund the SN trust when we both pass. It will be up to my typical daughter to manage that trust.
I am thinking he is going to need residential care when he is older because it would be unfair to my daughter to expect her to take care of him once we can no longer do so.
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| Posted 11/12/18 11:53 AM |
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Diane
Hope is Contagious....catch it
Member since 5/05 30683 total posts
Name:
D
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Re: Does anyone feel "stuck" geographically because of services?
Posted by lightblue
Posted by LSP2005
My friends whose children have autism signed them up to have potential residential housing when they were about 3 years old and told that they should qualify at 25. If you think you want that as an option, I would look into those housing options now for the future now. I would also speak with an attorney about establishing a special needs trust so that their finances are taken care of and you can get them into the residential housing.
Thank you. Strangely enough we were denied medicaid when I first applied (he was 4 at the time) and I am going to try again when I have to apply for permanent OPWDD eligibility when he is 7 going on 8 (he just turned 6 this past August). I think I need medicaid first to even be on any list. I would be surprised if he gets denied again because he is considered severe on the Autism spectrum, non verbal, and also diagnosed with intellectual disability.
I did see a lawyer and set up a special needs trust that takes effect when we both pass. We also purchased a whole-life policy that will fund the SN trust when we both pass. It will be up to my typical daughter to manage that trust.
I am thinking he is going to need residential care when he is older because it would be unfair to my daughter to expect her to take care of him once we can no longer do so.
Did you already apply for OPWDD? You do NOT need Medicaid to be on any list. After I got the servies, I applied for the Medicaid for my son (the medicaid waiver program) they call it.
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| Posted 11/12/18 12:43 PM |
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lightblue
LIF Adult
Member since 1/17 2249 total posts
Name:
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Re: Does anyone feel "stuck" geographically because of services?
Posted by Diane
Posted by lightblue
Posted by LSP2005
My friends whose children have autism signed them up to have potential residential housing when they were about 3 years old and told that they should qualify at 25. If you think you want that as an option, I would look into those housing options now for the future now. I would also speak with an attorney about establishing a special needs trust so that their finances are taken care of and you can get them into the residential housing.
Thank you. Strangely enough we were denied medicaid when I first applied (he was 4 at the time) and I am going to try again when I have to apply for permanent OPWDD eligibility when he is 7 going on 8 (he just turned 6 this past August). I think I need medicaid first to even be on any list. I would be surprised if he gets denied again because he is considered severe on the Autism spectrum, non verbal, and also diagnosed with intellectual disability.
I did see a lawyer and set up a special needs trust that takes effect when we both pass. We also purchased a whole-life policy that will fund the SN trust when we both pass. It will be up to my typical daughter to manage that trust.
I am thinking he is going to need residential care when he is older because it would be unfair to my daughter to expect her to take care of him once we can no longer do so.
Did you already apply for OPWDD? You do NOT need Medicaid to be on any list. After I got the servies, I applied for the Medicaid for my son (the medicaid waiver program) they call it.
Yes right now he has provisional eligibility and approval for Family Support Services only. I use it for a Sunday respite program and voucher reimbursement for up to 1k a year on swim lessons. I worked with a non-medicaid service coordinator back in January 2017 to apply for medicaid but was denied.
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| Posted 11/12/18 1:25 PM |
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LSP2005
Bunny kisses are so cute!
Member since 5/05 19458 total posts
Name:
L
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Re: Does anyone feel "stuck" geographically because of services?
Posted by TwinMommyToBoys
Posted by LSP2005
My friends whose children have autism signed them up to have potential residential housing when they were about 3 years old and told that they should qualify at 25. If you think you want that as an option, I would look into those housing options now for the future now. I would also speak with an attorney about establishing a special needs trust so that their finances are taken care of and you can get them into the residential housing.
Not necessarily true. Placement is sometimes upstate our out of state and then during adulthood the “child” would come back for age out housing that would continue as an adult. Placement as a child isn’t a guarantee. There needs to be a reason why the child cannot live with their family. We turn away hundreds of kids a year because there just isn’t housing availability. Signing them up at 3, they will not get placement at 25. Housing is available for children aging out of residential settings OR a priority 1, meaning they are in crisis at home and the family cannot care for the person
I am in NJ, and was told this was the process here by multiple attorneys. Maybe it is different in NY, but for NJ this is the process for once a person ages out. This is not for children who have needs beyond a group home. Both of my friends kids would be ok in group home settings as adults.This is not for when your child is still a kid, which is what I wrote above. I thought OP was asking about when her child is grown, not right now.
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| Posted 11/12/18 1:58 PM |
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Dolphinsbaby
My 3 little guys!
Member since 12/10 2943 total posts
Name:
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Re: Does anyone feel "stuck" geographically because of services?
Posted by lightblue
Posted by Diane
Posted by lightblue
Posted by LSP2005
My friends whose children have autism signed them up to have potential residential housing when they were about 3 years old and told that they should qualify at 25. If you think you want that as an option, I would look into those housing options now for the future now. I would also speak with an attorney about establishing a special needs trust so that their finances are taken care of and you can get them into the residential housing.
Thank you. Strangely enough we were denied medicaid when I first applied (he was 4 at the time) and I am going to try again when I have to apply for permanent OPWDD eligibility when he is 7 going on 8 (he just turned 6 this past August). I think I need medicaid first to even be on any list. I would be surprised if he gets denied again because he is considered severe on the Autism spectrum, non verbal, and also diagnosed with intellectual disability.
I did see a lawyer and set up a special needs trust that takes effect when we both pass. We also purchased a whole-life policy that will fund the SN trust when we both pass. It will be up to my typical daughter to manage that trust.
I am thinking he is going to need residential care when he is older because it would be unfair to my daughter to expect her to take care of him once we can no longer do so.
Did you already apply for OPWDD? You do NOT need Medicaid to be on any list. After I got the servies, I applied for the Medicaid for my son (the medicaid waiver program) they call it.
Yes right now he has provisional eligibility and approval for Family Support Services only. I use it for a Sunday respite program and voucher reimbursement for up to 1k a year on swim lessons. I worked with a non-medicaid service coordinator back in January 2017 to apply for medicaid but was denied.
Wow. I am surprised. Once we were approved by OPWDD we had no problem getting Medicaid (waiver). We have yet to use any services bc everything takes so damn long, but I am in the process of switching to self direction now. My son is 5 1/2 so I have to go through the process again soon once he ages out of the provisional eligibility. Ugh.
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| Posted 11/12/18 4:13 PM |
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lightblue
LIF Adult
Member since 1/17 2249 total posts
Name:
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Re: Does anyone feel "stuck" geographically because of services?
Posted by Dolphinsbaby
Posted by lightblue
Posted by Diane
Posted by lightblue
Posted by LSP2005
My friends whose children have autism signed them up to have potential residential housing when they were about 3 years old and told that they should qualify at 25. If you think you want that as an option, I would look into those housing options now for the future now. I would also speak with an attorney about establishing a special needs trust so that their finances are taken care of and you can get them into the residential housing.
Thank you. Strangely enough we were denied medicaid when I first applied (he was 4 at the time) and I am going to try again when I have to apply for permanent OPWDD eligibility when he is 7 going on 8 (he just turned 6 this past August). I think I need medicaid first to even be on any list. I would be surprised if he gets denied again because he is considered severe on the Autism spectrum, non verbal, and also diagnosed with intellectual disability.
I did see a lawyer and set up a special needs trust that takes effect when we both pass. We also purchased a whole-life policy that will fund the SN trust when we both pass. It will be up to my typical daughter to manage that trust.
I am thinking he is going to need residential care when he is older because it would be unfair to my daughter to expect her to take care of him once we can no longer do so.
Did you already apply for OPWDD? You do NOT need Medicaid to be on any list. After I got the servies, I applied for the Medicaid for my son (the medicaid waiver program) they call it.
Yes right now he has provisional eligibility and approval for Family Support Services only. I use it for a Sunday respite program and voucher reimbursement for up to 1k a year on swim lessons. I worked with a non-medicaid service coordinator back in January 2017 to apply for medicaid but was denied.
Wow. I am surprised. Once we were approved by OPWDD we had no problem getting Medicaid (waiver). We have yet to use any services bc everything takes so damn long, but I am in the process of switching to self direction now. My son is 5 1/2 so I have to go through the process again soon once he ages out of the provisional eligibility. Ugh.
Yeah I have no clue how. Because he is severe and his test scores are very low. Good luck getting approved for self direction!
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| Posted 11/12/18 4:34 PM |
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BargainMama
LIF Adult
Member since 5/09 15657 total posts
Name:
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Re: Does anyone feel "stuck" geographically because of services?
Posted by lightblue
Posted by LSP2005
My friends whose children have autism signed them up to have potential residential housing when they were about 3 years old and told that they should qualify at 25. If you think you want that as an option, I would look into those housing options now for the future now. I would also speak with an attorney about establishing a special needs trust so that their finances are taken care of and you can get them into the residential housing.
Thank you. Strangely enough we were denied medicaid when I first applied (he was 4 at the time) and I am going to try again when I have to apply for permanent OPWDD eligibility when he is 7 going on 8 (he just turned 6 this past August). I think I need medicaid first to even be on any list. I would be surprised if he gets denied again because he is considered severe on the Autism spectrum, non verbal, and also diagnosed with intellectual disability.
I did see a lawyer and set up a special needs trust that takes effect when we both pass. We also purchased a whole-life policy that will fund the SN trust when we both pass. It will be up to my typical daughter to manage that trust.
I am thinking he is going to need residential care when he is older because it would be unfair to my daughter to expect her to take care of him once we can no longer do so.
Just make sure your child is NOT the beneficiary of that life insurance policy. I was told by Social Security that they count whole life insurance as a "resource" if you will be applying for SSI when he turns 18.
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| Posted 11/13/18 10:38 PM |
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Diane
Hope is Contagious....catch it
Member since 5/05 30683 total posts
Name:
D
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Re: Does anyone feel "stuck" geographically because of services?
Posted by lightblue
Posted by Diane
Posted by lightblue
Posted by LSP2005
My friends whose children have autism signed them up to have potential residential housing when they were about 3 years old and told that they should qualify at 25. If you think you want that as an option, I would look into those housing options now for the future now. I would also speak with an attorney about establishing a special needs trust so that their finances are taken care of and you can get them into the residential housing.
Thank you. Strangely enough we were denied medicaid when I first applied (he was 4 at the time) and I am going to try again when I have to apply for permanent OPWDD eligibility when he is 7 going on 8 (he just turned 6 this past August). I think I need medicaid first to even be on any list. I would be surprised if he gets denied again because he is considered severe on the Autism spectrum, non verbal, and also diagnosed with intellectual disability.
I did see a lawyer and set up a special needs trust that takes effect when we both pass. We also purchased a whole-life policy that will fund the SN trust when we both pass. It will be up to my typical daughter to manage that trust.
I am thinking he is going to need residential care when he is older because it would be unfair to my daughter to expect her to take care of him once we can no longer do so.
Did you already apply for OPWDD? You do NOT need Medicaid to be on any list. After I got the servies, I applied for the Medicaid for my son (the medicaid waiver program) they call it.
Yes right now he has provisional eligibility and approval for Family Support Services only. I use it for a Sunday respite program and voucher reimbursement for up to 1k a year on swim lessons. I worked with a non-medicaid service coordinator back in January 2017 to apply for medicaid but was denied.
what was reason for being denied? You can appeal it.
Message edited 11/14/2018 7:40:26 AM.
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| Posted 11/14/18 7:39 AM |
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myminions
LIF Toddler
Member since 2/14 454 total posts
Name:
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Re: Does anyone feel "stuck" geographically because of services?
Now I would like to ask the million dollar question.:
Why is OPWDD a big secret? No one seems to inform you of it ...the school districts don't , pediatrician doesn't. I found out about it by talking to another mom who stumbled across it when she was talking to her gynecologist and revealed she had a son with ADHD.
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| Posted 11/29/18 7:11 PM |
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KarenK122
The Journey is the Destination
Member since 5/05 4431 total posts
Name:
Karen
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Re: Does anyone feel "stuck" geographically because of services?
Posted by myminions
Now I would like to ask the million dollar question.:
Why is OPWDD a big secret? No one seems to inform you of it ...the school districts don't , pediatrician doesn't. I found out about it by talking to another mom who stumbled across it when she was talking to her gynecologist and revealed she had a son with ADHD.
I don't think it is. If you belong to any special needs facebook group it is mentioned all the time. Your SEPTA should be doing presentations on it (we just did one on Monday) and your school social worker should also be talking to eligible parents about it.
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| Posted 11/29/18 10:02 PM |
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