Aging parents and disabled siblings

[Lecka]

I applied for OPWDD for my son and then we moved out of state.  
 

I think it’s good advice to hire an advocate unless *the parents just didn’t follow through on a next step* from the agency they tried.  Like — was that the end of the road, or did they just not ask “so what now?” 
 

I applied for my son through an agency (a cerebral palsy agency) that was one of 2-3 options in my region (?) but it was the only one at-all local. Then I had case management through them.  I think….  
 

I don’t think I filled out much paperwork on my own vs sitting in an office while someone filled stuff out while talking to me.

 

I know I went to a required information meeting that was from someone who was actually from OPWDD, and someone would observe my son at school sometimes and I think that person was actually from OPWDD.  But I think I was mostly going through the cerebral palsy agency.

 

So anyway — I found it to be difficult and my son was a shoe-in to qualify.  It took time.  It was confusing to understand.  
 

But people were always helpful to me with it.  People were always able to tell me the next thing to do.  
 

Where I lived there were more services that were not through OPWDD and I heard that the BOCES vo-tech was really good and would work with people with disabilities, and they didn’t have to have a full high school diploma.  There is an issue in New York that you have to have a full diploma for vo-tech but I was told that wouldn’t have applied for my son.  
 

I’m not certain of my details but that is what I remember.  
 

I will say she might want to live somewhere that has more services because even with funding that doesn’t make there be programs in your little rural area.  They also did a lot with self-determination but even that can mean — you choose individual programs to spend funding on.

 

I also think my son was on a home and community based waiver but that that was included within OPWDD.

 

I applied not knowing how long we would live there but then we moved after living there for 3 years after all.  
 

Edit:  I am just sharing about my experience applying for OPWDD in a fairly rural area.  
 

I do think my agency was kind-of like, you can apply, but if you don’t have a certain school placement it’s iffy.  My son had a school placement where they said — he would be expected to qualify.  And he had a diagnosis expected to qualify.  So I can see an agency being less encouraging but they aren’t the people who decide on the applications!  But I could see them not being as motivated for something that was not as straight-forward.  Edit:  I mean — I can see it making sense to hire and advocate who specializes in more unusual situations.  

Edited February 26, 2023 by Lecka

[kbutton]

20 minutes ago, City Mouse said:

For everyone who is telling Tiggy what she should do to take care of her sister, how is she  supposed to do all that when her parents (and I suppose the sister) doesn’t agree?

People seem to forget that having a POA is not the same as guardianship. Even with a POA, no one can make the sister do anything.

even if the sister gets SSI (Which ever one is for people who have never worked), when the parents die and leave all that money to sister she will have too many resources to qualify for public assistance. Maybe a special needs trust can shelter that much money, but I don’t know, but even with an Able account there are limits to how much money can be in the account.

These are still the same steps that someone needs to follow, whether she does it ultimately or not. 

It doesn't sound like the sister is being coerced at this point. 

SN trusts do shelter money--that is their whole point, and ABLE accounts are probably one of the more straightforward parts of this whole situation. Those are not difficult suggestions at all. It might still require some hoop jumping, but most of it will be similar to what happens when you do estate planning of any kind (particularly estate planning with a trust for minor children).

[Drama Llama]

ABLE requires that the disability existed before 26.  
 

[KSera]

1 hour ago, BandH said:

I think that the not being able to work thing is an issue because even people who don’t socialize a lot need regular contact with humans, and a schedule and a routine.  

But, I think that employment that pays a living wage is an ambitious goal. 

Could you envision an adulthood like this?

Her parents buy her an apartment or small house in an area that is walkable to some basic things like a grocery store, so rent isn’t a cost.

She gets a roommate, probably also someone with a disability, who pays the utilities (because rent would be income, I think?) and provides some social contact.

The rest of your parents $ goes into a special needs trust, for things like home repairs, major medical issues.

She gets SSI (note: the 21 rule is OWPDD, not SSI,  SSI will be easier, albeit not easy, to get than OWPDD or a Medicaid Waiver, because she will qualify based on her current capabilities), and SNAP which, with frugal living and no rent or utilities or emergency funds should be enough.

She volunteers 5 days a week to have some structure.

Family visits regularly and helps out with big things like taxes, cleaning the gutters, or medical care.  
 

Do you think she could get the skills to do that? 

I just wanted to add to your suggestions above, that in our  search for housing solutions, we found a couple organizations that are set up specifically to help people with disabilities and their families arrange shared housing. Some of them have roommate match services and they help you determine what is needed. Like, do the families just need to pay for someone to drop in occasionally to provide help or do they need to share the cost of a live-in caregiver, or what. 

29 minutes ago, City Mouse said:

For everyone who is telling Tiggy what she should do to take care of her sister, how is she  supposed to do all that when her parents (and I suppose the sister) doesn’t agree?

People seem to forget that having a POA is not the same as guardianship. Even with a POA, no one can make the sister do anything.

even if the sister gets SSI (Which ever one is for people who have never worked), when the parents die and leave all that money to sister she will have too many resources to qualify for public assistance. Maybe a special needs trust can shelter that much money, but I don’t know, but even with an Able account there are limits to how much money can be in the account.

I agree that this is a disaster in the making, but not one that Tiggy can solve. Sister will either have to go live with the non-preferred siblings, or she starts out living alone in parents house with or without a care taker. - Maybe that is the answer. Find a “roommate” to live rent free with sister to take care of sister. Sounds like a room could keep a full-time job around taking care of sister. 
 

All Tiggy can really do is continue to let parents and sister know that she does not have the resources (not meaning just money) to take care of sister and that other plans need to be made.

A special needs trust can definitely be set up in a way that it does not affect the sister’s ability to continue receiving government benefits. It seems like Tiggy could be a help to her parents in helping them know what things need to be set up. It doesn’t sound like this is something her sister is fighting against, or anything. Or Tiggy could be helping her sister directly in getting these things set up. She doesn’t need to have power of attorney to help her sister as long as her sister is present for these things. Some organizations may ask her to sign some thing if she wants you included on correspondence so you can help. 
 

[KSera]

6 minutes ago, BandH said:

ABLE requires that the disability existed before 26.  
 

Wouldn’t a CP diagnosis in itself indicate that this was a condition acquired at, before, or shortly after birth? For that matter, Wouldn’t autism also be that way? 

[Drama Llama]

33 minutes ago, City Mouse said:

For everyone who is telling Tiggy what she should do to take care of her sister, how is she  supposed to do all that when her parents (and I suppose the sister) doesn’t agree?

People seem to forget that having a POA is not the same as guardianship. Even with a POA, no one can make the sister do anything.

I am reading it as Tiggy’s parents and sister have their heads in the sand and not that they are actively opposing things like an SSI application.  My guess is that they are scared and avoiding thinking about anxiety provoking things.

POA, as I understand it, doesn’t let you force anything but the does let you do things on people’s behalf.  It does not sound like OP’s sister is going to be able to do things like talk to an SSI office on the phone to set an appointment, and in my experience without some kind of something in writing Tiggy or Tiggy’s parents can’t do that for her, even if sister wants it.

[Mrs Tiggywinkle Again]

I asked my mom today.  No one has POA for my sister; she is able to make her own decisions—she just can’t maneuver the steps to get from point A to point B.  They have considered the small apartment idea in the past, but the city we are near would not be a place that I am comfortable living in much less my naive and overly trusting sister.  Public transportation is a major problem here for everyone; not just people with disabilities.  Even if they set her up with a small house or apartment paid in perpetuity or something, the issue remains that at some point there would be no parents left to check on her and my other siblings live or are moving over fourteen hours away.  
They have considered elder care in the past, at least elder care without any lifting or incontinence care, but my sister absolutely did not want to explore that option and they didn’t push it.  There is no coercion; my sister is the one shooting down every idea past her comfort zone and I frankly think my parents have not pushed her enough.  Partly because the month she graduated from college is the month my grandparents deteriorated and my mom began full time caregiving for them.

Something did click with my mom finally though(I think my social worker sister called her as well after I complained to her about this) and she called her cousin, a disability and special needs/estate attorney, and set up an appointment to start on a special needs trust. He gave her the name and number for an advocate in our area as well and she says she’s calling tomorrow.  
But then my grandmother went and had her first ever seizure, so our phone call got cut short and who knows if my mom will have time tomorrow. 

Nursing homes here seem to be the catch all for abandoned adults who can’t live entirely by themselves but aren’t eligible for an OPWDD group home or the state psychiatric hospital.  Many of the people I interact with in the nursing homes would likely do well with a supportive housing situation, but the wait list here is a decade long, so they wind up in a nursing home.  I don’t know if it’s like that everywhere.  We don’t have a lot of resources.

[Drama Llama]

2 minutes ago, KSera said:

Wouldn’t a CP diagnosis in itself indicate that this was a condition acquired at, before, or shortly after birth? For that matter, Wouldn’t autism also be that way? 

CP is an acquired disability that comes from a brain injury.  In this case it happened at or soon after birth, but it doesn’t sound like they had a paper trail to prove that.  It also doesn’t sound like the ASD is documented.

So the same steps that would be needed for OPWDD would apply there.  Not saying they shouldn’t do it, just that it’s also complicated.  

 

[Mrs Tiggywinkle Again]

4 minutes ago, BandH said:

I am reading it as Tiggy’s parents and sister have their heads in the sand and not that they are actively opposing things like an SSI application.  My guess is that they are scared and avoiding thinking about anxiety provoking things.

POA, as I understand it, doesn’t let you force anything but the does let you do things on people’s behalf.  It does not sound like OP’s sister is going to be able to do things like talk to an SSI office on the phone to set an appointment, and in my experience without some kind of something in writing Tiggy or Tiggy’s parents can’t do that for her, even if sister wants it.

Oh, no they don’t actively opposite it at all.  It’s a combination of my dad is super busy, my mom is full time caregiving for my grandma, and they didn’t plan because nobody ever really told them they had to(despite the school being required by law to discuss transition plans as she had an IFSP, despite being homeschooled) and my mom’s outdated social norms where sister would be welcome to live with a sibling forever.  When the agency said the records don’t exist, my mom thought that meant sister would not get any help ever and didn’t pursue it further.

Sister is certainly not the only person with autism in my family history.  The others at her level of functioning did spend their lives with family.  The world has since changed.  It just never ceases to shock me that this wasn’t brought up ten years ago. Especially because we are already discussing transition with my seventh grader.

[KSera]

4 minutes ago, Mrs Tiggywinkle Again said:

Something did click with my mom finally though(I think my social worker sister called her as well after I complained to her about this) and she called her cousin, a disability and special needs/estate attorney, and set up an appointment to start on a special needs trust. He gave her the name and number for an advocate in our area as well and she says she’s calling tomorrow.  
But then my grandmother went and had her first ever seizure, so our phone call got cut short and who knows if my mom will have time tomorrow.

Oh dear, I'm sorry about your grandma! That's really good though that they are going to start the special needs trust going. That will make a huge difference in her not losing any government benefits that are able to be set up for her.

[Mrs Tiggywinkle Again]

The ASD was diagnosed by a school psychologist when sister was 7.  CP was diagnosed when her primary care physician ordered an MRI at 14. I don’t know what led to the ordering of the MRI. 

I did remember to mention to my mom that the newspaper articles and hospital publications about sister’s “miraculous” survival are accessible and might help. She had completely forgotten about those, so she wrote it down.  
Grandmother has end stage Parkinson’s. She came out of the seizure fine and completely refused any medical treatment or evaluation. The elderly people in my family are a ball of fun, let me tell you.

Edited February 26, 2023 by Mrs Tiggywinkle Again

[Ottakee]

21 minutes ago, BandH said:

ABLE requires that the disability existed before 26.  
 

Yes but hopefully they can prove that

 

[Ottakee]

3 minutes ago, Mrs Tiggywinkle Again said:

The ASD was diagnosed by a school psychologist when sister was 7.  CP was diagnosed when her primary care physician ordered an MRI at 14. I don’t know what led to the ordering of the MRI. 

Hopefully you can find those records or similar somewhere.

[Drama Llama]

Just now, Mrs Tiggywinkle Again said:

The ASD was diagnosed by a school psychologist when sister was 7.  CP was diagnosed when her primary care physician ordered an MRI at 14. I don’t know what led to the ordering of the MRI. 

Right, but am I understanding that neither of those documents still exist?  
 

She is clearly ABLE eligible, the question is what she needs to do to prove it.
 

[Ottakee]

Another option to add is CLS services….community living supports.   This is where someone would come in and help her with things like medication, paperwork, doctors appointments, meal planning, cooking laundry, or whatever else she would need. Could be just 2 to 3 hours a week or up to 30 to 40 hours per week and paid for through the Medicaid program and community mental health.

[Ottakee]

1 minute ago, BandH said:

Right, but am I understanding that neither of those documents still exist?  
 

She is clearly ABLE eligible, the question is what she needs to do to prove it.
 

You can self certify by filling out some paperwork.  Very easy to do if you don’t have the documentation.

[Mrs Tiggywinkle Again]

1 minute ago, Ottakee said:

Another option to add is CLS services….community living supports.   This is where someone would come in and help her with things like medication, paperwork, doctors appointments, meal planning, cooking laundry, or whatever else she would need. Could be just 2 to 3 hours a week or up to 30 to 40 hours per week and paid for through the Medicaid program and community mental health.

This is what I was thinking; I just didn’t know the name. Thank you.  This would be perfect for her.  She doesn’t have any mental health diagnosis; maybe she could qualify for anxiety, but I am not even sure she’d meet the diagnostic criteria.

My mom is Facebook friends with the school psychologist who diagnosed sister, so I suggested reaching out after speaking with her attorney cousin and seeing if an affidavit could work.  By reputation in our small disability world I know he’s a good lawyer so hopefully that works. I am just really impressed my mom called him.

Edited February 26, 2023 by Mrs Tiggywinkle Again

[Drama Llama]

3 minutes ago, Ottakee said:

Yes but hopefully they can prove that

 

I was just responding to the idea that ABLE would be simpler or could be done first.  I do think it’s possible but will require the same initial steps to prove that the disability is developmental and put together a paper trail.

[Storygirl]

For DS's ABLE account, we didn't have to provide any documentation when we signed up. If they ever ask us for it, we would have to supply proof, so it's important to be able to do that, just in case.  But we didn't have to upload any documents to open the account online. It was very easy to open the account -- took maybe 15 minutes.

Edited February 26, 2023 by Storygirl

[kbutton]

6 minutes ago, Mrs Tiggywinkle Again said:

 It’s a combination of my dad is super busy

If your dad is a consultant, perhaps he can alter his schedule if he were to see the importance since your mom is busy. 

Unless your parents are planning to kick off really soon, it seems reasonable that they can make steady progress on this issue like most people do even though it's very late. 

As for your sister shooting down ideas past her comfort zone, more information can probably help with that. It's a common problem, sometimes even for NT people.

[Storygirl]

Another thing about ABLE -- the states have their own systems, but you can open an account in a state where you don't reside. So if the state of residence has difficult barriers to opening an account, you can open it in another state. I think that each state can decide whether they will allow non-residents to apply. Ours does allow it.

[kbutton]

Also, some small towns are set up well for people with disabilities to live in. It wouldn't have to be a big city. My hometown, which I think we've PM'd about before, is one of those. It's the county seat and entirely walkable. People move there for services, including people with disabilities. There is some limited but straightforward public transit, a local hospital, low-income housing, etc. I think it can be a pain to change states, so it's worth knowing about portability for disability benefits. 

[Mrs Tiggywinkle Again]

56 minutes ago, kbutton said:

Also, some small towns are set up well for people with disabilities to live in. It wouldn't have to be a big city. My hometown, which I think we've PM'd about before, is one of those. It's the county seat and entirely walkable. People move there for services, including people with disabilities. There is some limited but straightforward public transit, a local hospital, low-income housing, etc. I think it can be a pain to change states, so it's worth knowing about portability for disability benefits. 

So funny you should mention this.  My parents want to move once my grandmother passes and that town is #1 on their list. They love it there.  Maybe I should encourage it…

The nature of my dad’s consulting work requires frequent travel and being onsite that he doesn’t have a ton of control over(I don’t want to be specific about the industry but it’s niche).

Edited February 26, 2023 by Mrs Tiggywinkle Again

[Drama Llama]

I think moving to a community where she's able to have more independence could be a great step. 

I think she (with help) needs to sort out the question of whether there's no way she could live independently, or whether in the right location, with the right community supports, and skills that can be developed, she can do so.  If she thinks independent living is a reasonable goal, then moving to a community where it's more realistic, while also focusing on increasing her skills, makes sense.  

[TechWife]

The school may have records. If your mom is willing to, perhaps she could reach out to the psychologist that is still there. 

[Ottakee]

4 hours ago, Mrs Tiggywinkle Again said:

This is what I was thinking; I just didn’t know the name. Thank you.  This would be perfect for her.  She doesn’t have any mental health diagnosis; maybe she could qualify for anxiety, but I am not even sure she’d meet the diagnostic criteria.

My mom is Facebook friends with the school psychologist who diagnosed sister, so I suggested reaching out after speaking with her attorney cousin and seeing if an affidavit could work.  By reputation in our small disability world I know he’s a good lawyer so hopefully that works. I am just really impressed my mom called him.

She would qualify with the autism diagnosis.  CMH does autism, developmental disabilities and mental health.

[Ottakee]

And yes to moving to an area with good services.  I moved from rural to small town that has a great bus system….door to door that is currently free, otherwise is 75 cents a ride.

and many areas have social groups too for those with extra challenges.

[kbutton]

3 hours ago, Mrs Tiggywinkle Again said:

So funny you should mention this.  My parents want to move once my grandmother passes and that town is #1 on their list. They love it there.  Maybe I should encourage it…

The nature of my dad’s consulting work requires frequent travel and being onsite that he doesn’t have a ton of control over(I don’t want to be specific about the industry but it’s niche).

They need to be eyes wide open--like other rural areas, infrastructure is changing and some things are dying out, but I think the younger crowd is doing some good stuff to create jobs (there are a few certain people that strangled the town many years ago by chasing out all industry, including non-smokestack industries, and those people are dying out now). It would not be hard to ask around and get realistic information, especially about subsidized housing, etc. The next town over with a college might be another option. 

All of the county services are there. It makes a big difference! 

[Mrs Tiggywinkle Again]

21 minutes ago, kbutton said:

They need to be eyes wide open--like other rural areas, infrastructure is changing and some things are dying out, but I think the younger crowd is doing some good stuff to create jobs (there are a few certain people that strangled the town many years ago by chasing out all industry, including non-smokestack industries, and those people are dying out now). It would not be hard to ask around and get realistic information, especially about subsidized housing, etc. The next town over with a college might be another option. 

All of the county services are there. It makes a big difference! 

The college next town over is where my sister really wants to get her bachelor’s degree if she decides to get one and I think that’s a draw for them. As well as we spend our summers at our seasonal campsite there and they love the campground with the grandkids.

Jobs aren’t a huge issue as my dad will probably consult until he drops dead and I don’t think my sister will really have a meaningful career.  Walkability and public transportation are going to be the biggest issue.  My sister also likes nature and hiking and would like to live someplace where that’s available, and it sounds like they’ve taken her wishes into consideration on what they’ll do once they can move.  So overall I really wouldn’t be surprised if that’s an area they wind up in.

I am honestly feeling a lot more settled since taking to my mom earlier.  I don’t necessarily want reality to slap her in the face but she needs to understand the world today.  For instance, the conversation went something like:

Me: Mom, it’s highly likely I will be disabled or legally blind myself when Sister needs help and I won’t be able to help her.

Mom: Well, she could help you.

Me: I will need someone to drive me, which Sister can’t do.

Mom: I think with some money she would be fine on her own. 

Me: Mom, she cannot even manage the grocery store.

Mom: Well, you could never manage the grocery store either, and when was the last time you were even in a store?

Me: This is because I accept that I am on the autism spectrum and have some limitations, so Husband and I have specifically chosen to live someplace with Instacart and Walmart delivery where I order on my phone and they can leave it on my porch so that I can manage okay.

Mom: They have that? Is that something Sister can get if she lives by herself?

This is what I’m dealing with. Well meaning and loving but completely out of touch.

 

[kbutton]

3 minutes ago, Mrs Tiggywinkle Again said:

This is what I’m dealing with. Well meaning and loving but completely out of touch.

It sounds like they will eventually get on board. If they are healthy, there is likely time. 

5 minutes ago, Mrs Tiggywinkle Again said:

Jobs aren’t a huge issue as my dad will probably consult until he drops dead and I don’t think my sister will really have a meaningful career.  Walkability and public transportation are going to be the biggest issue.  My sister also likes nature and hiking and would like to live someplace where that’s available, and it sounds like they’ve taken her wishes into consideration on what they’ll do once they can move.  So overall I really wouldn’t be surprised if that’s an area they wind up in.

Oh, that's wild!

By the way, they've had/have a number of blind residents with guide dogs, and they made sure in recent years that the major intersections have audible cues. 🙂 

I am so curious now where you camp, lol!

[momto3innc]

This is a total rabbit trail and likely something you already know, but I want to be sure. With your diagnosis of keratoconus, have you looked into cross linking surgery? Both of my boys have had it for their keratoconus, and we are pleased with what it’s done. Doesn’t make it better (although it has a bit with both of them), but can stop progression of it getting worse.

[Mrs Tiggywinkle Again]

10 minutes ago, momto3innc said:

This is a total rabbit trail and likely something you already know, but I want to be sure. With your diagnosis of keratoconus, have you looked into cross linking surgery? Both of my boys have had it for their keratoconus, and we are pleased with what it’s done. Doesn’t make it better (although it has a bit with both of them), but can stop progression of it getting worse.

I had a corneal transplant in one eye in 2012, before the FDA approved crosslinking, and had really great results until the last year.  My right eye is no longer correctable beyond 20/200 and I have an evaluation in April for crosslinking. However since I have structural collagen weaknesses and my eyesight even after a corneal transplant has deteriorated, just at a much slower pace than before, the corneal specialists have not been really hopeful that they can do anything but slow progression. 
One of my sisters with kerataconus but does not have EDS per her genetics has had great results with corneal cross linking with not just stability but marked vision improvement, so I am hoping it might work well for me too.