Aging parents and disabled siblings

[Mrs Tiggywinkle Again]

This isn’t a JAWM, but please don’t quote. 

My mom is a well meaning person.  But clueless and sheltered in many ways. She was essentially raised by her grandparents who were born prior to 1915, in a small farming community filled with generations of her family.  Small enough that while she and my dad aren’t related they have many shared relatives. She left for a small town college, married my dad immediately afterward and then quickly became a homeschool stay at home mom of many kids  in a very rural setting who didn’t work at all after I was six.  She’s cared for her elderly parents 24/7 since my youngest sister moved away. She just…doesn’t have a lot of real world experience in a lot of ways.

Yesterday she mentioned that my dad is finally retiring. This led to a conversation where I realized that they have absolutely no long term care plans for my disabled 30 year old sister.  In my mom’s mind, they never needed to, because family takes care of their own and Sister would just go live with one of her siblings who’d care for her or move between siblings, and they’d leave some extra money in their will.  All of my siblings save disabled sister and one sister in her mid 20s that just moved back temporarily don’t even live within a day’s drive of my parents.  Several of my siblings haven’t seen this sister in years and do not come back to visit. Two don’t speak to my parents or the other siblings.  The vast majority of my sisters who are married made unwise decisions and are now divorced or are in marriages with men who will not be willing to provide my disabled sister with a place to live or caregiving.  In short: family is not going to care for my sister.  She does not drive, does volunteer at an animal shelter but is not physically strong and cannot lift, stand for long periods of time and is so incredibly awkward that she won’t even answer the phone.  She cannot live alone and is unlikely to ever work a job.

Then my mom proceeds to tell me that the person who helped them get Medicaid for sister when she aged off their health insurance suggested they look at SSDI, so Mom actually did call the local agency that helps with developmentally disabled people to get that process started, and it turns out that all of my sister’s medical records that the agency tried to get are long gone.  They were only required to keep them seven years after her 18yh birthday and they’ve been destroyed.  So the agency said they can’t help because there is no proof that sister’s disabilities began before she was 21 and she’s never held a job.  She was a micropreemie, born before 24 weeks, and the disabilities stem from birth(her autism is probably genetic, though).

And she was homeschooled, though she did receive services through our school district including academic supports, there’s not enough records there of anything either.  She still qualified for transition services, but someone dropped the ball, probably because she was homeschooled and they didn’t really care, and my mom would not have known to ask.

When I peppered Mom with questions yesterday she just got annoyed and was like, well she can just live in a tiny house on your property.  I immediately reminded my mom that I don’t live as rurally as she does and that zoning laws apply here, plus I am many years older than sister, work full time, and my husband and I want to travel frequently post kids and before i go into assisted living—and I have two special needs children of my own, though at this point I fully expect they’ll be able to live independently with maybe some Mom guidance occasionally.
Also: I have vascular Ehlers Danlos with kerataconus.  Assisted living and legal blindness is almost certainly in my elderly future. My husband will die on our land and will not be interested in caring for sister either(he’s a good guy, but not a caregiver in those ways).

Sister needs a supported residence and vocational rehab, and possibly assisted living as some point.  I am already starting transition services with DS12’s school as the law requires. Everyone we have worked with has stressed the important of keeping hard copies of all medical records, evaluations, IEPs, etc. I have eleven years of records right now. I just cannot believe no one ever brought this up and that my parents didn’t consider anything.  They’re late 60s and I know this will likely get dumped on me.

Thanks for reading this venting book.

Edited February 25, 2023 by Mrs Tiggywinkle Again

[Katy]

I’m sorry. I suspect that a social worker will be able to go through a process for an affidavit that she was disabled from birth and the records were lost. Doesn’t her current provider have the old records?  

[Mrs Tiggywinkle Again]

7 minutes ago, Katy said:

I’m sorry. I suspect that a social worker will be able to go through a process for an affidavit that she was disabled from birth and the records were lost. Doesn’t her current provider have the old records?  

She has a primary care NP on record but doesn’t have ongoing medical needs, so may not have ever seen that person post a getting established visit.
 

The agency, which does all the point of access stuff for disability services here, is the one telling my mom there are no medical records.  I am also quite sure that my mom didn’t seek a neuropsychiatric evaluation or anything; they did an MRI when my sister was a young teen that showed significant brain damage and cerebral palsy, but that record was gone when the agency tried to get it. Other than that they probably sought nothing more than whatever the school psych evaluation required for sister to get serviced through the district.  This was the 1990s Wild West of Homeschooling when professionals were viewed with suspicion.

I don’t know if it matters at this point, but I have questions about the original eval by the school anyway. If I remember correctly they said she was significantly cognitively disabled/low IQ, but as an adult she’s been able to earn an associates degree and is a fantastic and well read creative writer.

 

Edited February 25, 2023 by Mrs Tiggywinkle Again

[KidsHappen]

One thing that can be done is to check her SS records. That will prove that she has never held a job or paid taxes.

[KSera]

Is she already getting SSI? I can't tell if you mean she is getting SSI and you are looking into whether she can get SSDI as well, or if she doesn't have either. It seems like she could qualify for SSI if she isn't already, though the process can take a long time.

 

[Mrs Tiggywinkle Again]

17 minutes ago, KSera said:

Is she already getting SSI? I can't tell if you mean she is getting SSI and you are looking into whether she can get SSDI as well, or if she doesn't have either. It seems like she could qualify for SSI if she isn't already, though the process can take a long time.

 

No, she has never gotten anything. My parents probably never even considered(or knew, really) that those kind of programs exist. the agency my mom contacted had recommended trying to get disability and then move onto getting things like vocational rehab, supported housing, maybe some social skills therapies.  My parents don’t even have any kind of health care proxy or anything with her.

She hasn’t received any services since she was a teenager and getting academic tutoring through the school.  I think I am just astonished my mom has never once considered the future at all other than leaving extra money to her(which I pointed out could screw up her Medicaid, which she is on because she has no income).  I am already putting things in place for my 12 and 7 year olds just in case.

Edited February 25, 2023 by Mrs Tiggywinkle Again

[Harriet Vane]

I have no advice, but will be following this thread with interest. I have someone dear to me who is in a similar situation. This person has a major, life-impacting, rare health condition that they were born with for which they have to take medication. If this person does not take their medication, this person will die. This person thrived in school and university but was always quirky with social anxiety, and I have long suspected high IQ with autism for this person. Once they graduated from university, this person floundered with the lack of structure and with their ongoing social anxiety and was unable to complete the steps to get a job. It's been many years, and this person's excellent degree is now useless. So I'm worried about the same sorts of things, and I have no idea what can be done.

It sounds like your mom is living by the norms of a different era entirely. The good thing is that they can probably salvage the situation if they put some energy into it right away. My guess is that the extra money they intended to leave your sister would be better spent on a lawyer who specializes in disability advocacy or possibly even a social worker they hire to help them navigate this.

[Beth S]

I have not BTDT, but a "Special Needs Trust" is structured to maintain Medicaid eligibility.

I just want to encourage you--you're doing the right thing, and the paperwork is onerous, but it should be do-able.

 

[KSera]

33 minutes ago, Mrs Tiggywinkle Again said:

No, she has never gotten anything. My parents probably never even considered(or knew, really) that those kind of programs exist. the agency my mom contacted had recommended trying to get disability and then move onto getting things like vocational rehab, supported housing, maybe some social skills therapies.  My parents don’t even have any kind of health care proxy or anything with her.

She hasn’t received any services since she was a teenager and getting academic tutoring through the school.  I think I am just astonished my mom has never once considered the future at all other than leaving extra money to her(which I pointed out could screw up her Medicaid, which she is on because she has no income).  I am already putting things in place for my 12 and 7 year olds just in case.

I agree with Beth that your parents should make sure their will is set up to leave the money to a special needs trust, otherwise it jeapordizes your sister's ability to get SSI either. She may be able to set up an ABLE account, which would allow her to have money in an account that doesn't affect SSI or Medicaid eligibility. It requires that the disability began before she turned 26, but with her only 30 now, that seems doable to prove. I would definitely pursue the SSI route, though. There is no age requirement for when the disability began with SSI.

Vocational Rehab doesn't require the other things to be set up first either. Unless it's different where your sister is living, but usually VR doesn't require someone already be receiving SSI (many people who get VR never do get SSI because VR ends up getting them employed).

[kbutton]

So, the services from the school might be sketchy information, but that supplies the before a certain age part. 

It's frustrating because doctor's offices might not have been required to keep records for a long time, but many did. It IS recent that doctor's offices are allowed to just ###can everything that's older than 7 or 8 years. IMO, they should be required to tell patients that in plenty of time to retrieve their records, and then they should let a patient have them for free since they don't have to be copied. Most offices both shred stuff with abandon and charge out the wazoo to have access to your own records.

Anyway, I suspect that she could have an up-to-date set of testing, a good lawyer, and bridge all that to the school district records. That would be how I would start.

57 minutes ago, Mrs Tiggywinkle Again said:

 I am already putting things in place

I hope this part is okay to quote--I needed something to refer to. I know SO MANY PEOPLE who do not pursue anything for their kids. More are homeschooled than not, but it's astonishing how many non-homeschoolers do this as well. Or how many people wait until their kid is 17.

[Sneezyone]

All I have is sympathy. My parents never created a plan for my sib because they didn't think they needed to. My dad is no longer capable of assisting as his memory is failing and I no longer have a relationship with my mother (as the primary caregiver for all of us) over her failure to appreciate the seriousness and long-term nature of my sister's issues and her verbal abuse of my sibs and I. My current plan is to pay off the house my sister is currently living in as quickly as possible and rely on social service supports to keep the lights/heat on long-term. My sibling is probably more high-functioning than yours but the mental and financial demands are no less severe and the recipient is far less appreciative/cognizant of the burden.

I would be looking for long-term support services for individuals with disabilities like supportive housing ASAP. If you can, find local organizations that do this work and start attending their board meetings/volunteering. Making connections in this space will help if you need to bring your sibling closer to you.

Edited February 25, 2023 by Sneezyone

[cbollin]

echoing to look into SNT (special needs trusts) and ABLE accounts.

on the ABLE accounts, double check in your state about the amount limits in that account.  Where I live, it's 17,000/year that can be placed in ABLE account (so if the will and insurance leave more... hmmmmm, better have that SNT). If the amount in ABLE goes above 100,000 person can lose SSI, but not necessarily lose medicaid, and there's the medicaid payback rules with it.  Still worth looking into, but good to know to ask those things.   make the trust the beneficiary not the person because it impacts how much assets the person has and impacts benefits.  I don't know if those things are state specific on dollar amounts. but just attended a workshop on that a few weeks ago here.

and be prepared to get legal help for SSI.  still working on that with my 20 y.o. (she wasn't eligible for ssi until she turns 18 due to our income, but it was not automatic and we're still in the appeal process. things were very slow with covid  ) eye roll at the process. as far as I understand the legal help gets paid a set percentage from back payments and the gov't controls that percentage or something. 

and yes, I have paper trail copies of all those records going back to when my youngest was 1 year old. lovely. and been preparing well before she turned 18 just to be clear on that..

A friend is almost about to become his younger brother's caregiver and is looking into group home situations. Nothing wrong if you don't/can't be full time caregiver.  Several at my church's disability ministry group have decided to be "family member" and hire out caregiver and living arrangements. no shame in that.

Edited February 25, 2023 by cbollin

[KSera]

1 minute ago, cbollin said:

and be prepared to get legal help for SSI.  still working on that with my 20 y.o.  eye roll at the process. as far as I understand the legal help gets paid a set percentage from back payments and the gov't controls that percentage or something. 

This is the step we are stalled at. How did you go about finding legal help for this? I asked the only lawyer we've ever worked with, and he had no one to recommend.

[Sneezyone]

13 minutes ago, KSera said:

This is the step we are stalled at. How did you go about finding legal help for this? I asked the only lawyer we've ever worked with, and he had no one to recommend.

Look for a SSDI rep/adjudicator on LinkedIn. It needn't be an attorney, just someone who knows the system and how disability claims are adjudicated. Some work off the books for pay.

Edited February 25, 2023 by Sneezyone

[sweet2ndchance]

Does she have Medicaid right now? That should pay for a new MRI to prove she has brain damage / cerebral palsy. She should be able to request one from her PCP. SSA is going to want one more recent than childhood anyways if she is going for SSI. A good disability lawyer should see her for free and only take a small portion of the back pay as their payment (there is a ceiling percentage of the backpay that they can take set by the SSA but I can't remember the exact number off the top of my head right now). The lawyer can help with gathering evidence to present as proof that she is eligible. Even if those old records are gone, she is still disabled. She might not get as much backpay as she would if she still had those records but she will at least get a monthly check.

[cbollin]

Just now, KSera said:

This is the step we are stalled at. How did you go about finding legal help for this? I asked the only lawyer we've ever worked with, and he had no one to recommend.

I kept asking around in the local disability support groups to find out who everyone else locally was using.  well, ok the first one I tried was actually recommended by the psychologist who did the SSI eval.  Person told me "I can see clearly she needs the help. and you have years of documentation.  But the damn rules are there.. so I have to be Scrooge on this....  but wink wink  I didn't give you this name, but wink wink...."  however that lawyer was not able to take another case at the time.  I just had to ask the other moms "who has a good lawyer to help me" and kept calling... and am still calling. someone will return my inquiry.  I'm sure that will happen. I hope that will happen.  

and for things like conservatorships, the local ARC chapter hosted some workshops and everyone in the room got business cards.

and with vocational rehab, I just called.  We're in progress on that. maybe my dd can work 15 hours a week with job coach on site. 

[Sneezyone]

ETA: because this probably wasn't clear...DH and I purchased a home that my sibling and her child could live in, affordably, during the pandemic. We repaired and sold our prior rental to buy a more affordable property for them. Is that an option for you? Not sure. It's just my solution to the housing crunch long-term. My sibling hasn't paid rent in four months (which is section-8 level affordable) but it gives me some peace of mind that I can obtain section-8 certification and be able to keep my sibling housed long-term. If that's an option, I'd consider it. I refuse to sacrifice my kids' futures because my parents were so foolish. My own sib has mental health challenges that prevent steady employment and is in possession of two BA degrees and almost an MA. It's not the capacity, it's the stability that's impossible. If there are ANY pre-18 records available, secure them quickly. Even retired physicians can provide attestations.

Edited February 26, 2023 by Sneezyone

[freesia]

1 hour ago, sweet2ndchance said:

Does she have Medicaid right now? That should pay for a new MRI to prove she has brain damage / cerebral palsy. She should be able to request one from her PCP. SSA is going to want one more recent than childhood anyways if she is going for SSI. A good disability lawyer should see her for free and only take a small portion of the back pay as their payment (there is a ceiling percentage of the backpay that they can take set by the SSA but I can't remember the exact number off the top of my head right now). The lawyer can help with gathering evidence to present as proof that she is eligible. Even if those old records are gone, she is still disabled. She might not get as much backpay as she would if she still had those records but she will at least get a monthly check.

I was going to suggest this too. And I’m sure there are witnesses to attest to the micro-preemie birth. 

[Mrs Tiggywinkle Again]

4 hours ago, freesia said:

I was going to suggest this too. And I’m sure there are witnesses to attest to the micro-preemie birth. 

My son was in the same NICU seven years ago, and there is only one RN left there from when he was there and no doctors, so there’s no one either who would remember my sister.  The school psychologist and the special Ed teacher that tutored her for the school are still in touch with my mom, but that is about it.

My sister’s disabilities are hard to quantify. She has an associate’s degree in general studies, a certificate in veterinary tech, and is incredibly well read, but cannot drive due to poor relexes, cannot navigate public transportation or the grocery store on her own, talk to strangers or answer a phone. Like she can cook and do laundry fine; but she can’t meal plan, form a grocery list, and go get the groceries, or remember that she needs to do laundry today. Yet she has a rather well written novel she’s about to self publish. She’d love to be a vet tech, but every job in that line wants someone who can answer the phone, talk to customers, schedule appointments, and she’d really struggle with all of that.  She’s also extremely tiny, struggles to lift more than a basket of laundry, and has an awkward gait from the CP.   She talks like a character in a Victorian novel, which other people tend to find really off putting as well. (One of my kids was telling her about some minor annoyance, and she replied, “Oh, my dear, how perfectly dreadful for you.” And was totally serious because that’s how she talks, but people just think she’s strange)  it’s just very difficult to explain her disabilities and so I suspect getting the supports she needs is going to be a long fight that needed to get started a decade ago.

I am not really even sure how much of the social disabilities are really autism related or just a result of how isolated she is.  When my youngest siblings lived at home, they had friends over a lot and often took this sister with their friend group to movies and other things they’d do.  She was much less awkward then and more socially aware and adept, but since everyone has moved away she goes no where but her volunteering walking shelter dogs and doesn’t really talk to anyone other than my parents, who aren’t even home all that much.  Years ago I suggested reaching out to the ARC locally because they had a social group at that time for higher functioning adults, but my mom wasn’t interested because in her mind my sister would always be surrounded by siblings and prefers her family.  She does prefer family, but there really is no family left locally, just my parents and me and a sibling who’s getting ready to move a few states away. Just because there was eight kids didn’t make my sister a built in social group for life.

Unless my parents drain their assets for their own elder care needs, they could probably leave her several hundred thousand dollars.  But I can’t forsee that being enough to cover housing as well as the assistance she’s going to need even just to get around.  And the wait lists for supported independent housing are running a decade long here right now, which is why I guess I may just really need to continue to try and explain reality to my mom and start getting my sister the supports she’s going to need long term. My siblings are never moving back, none of them will be in any position to take her in, and if my parents drop dead tomorrow she will probably wind up in a bad situation of either a nursing home or an emergency group home with APS involvement, all of which could be avoided with appropriate planning.

Edited February 26, 2023 by Mrs Tiggywinkle Again

[Carol in Cal.]

There are some good group homes out there.  I had a friend who fostered special needs children and she and her husband really liked Bethesda, which is a nation wide organization with Christian roots.  

Also, you might check whether there is a Parents Helping Parents group for your sister’s specific issues.  Those groups are an amazing resource for information and coaching.

[KSera]

Does she have a formal ASD diagnosis? I can’t recall if you said. That can be sufficient for qualifying for supports, particularly given she’s been unable to work. If she had help from vocational rehab though, they may be able to help her get into a job that would allow her to work in her comfort zone, without needing to answer phones or interact with customers. 

[Jean in Newcastle]

Does she understand her own needs?  I know that she might not be able to advocate for herself, but can she understand that she will need help going forward? 

[PeterPan]

Fwiw, it sounds like you're describing autism plus the cp. Maybe a lawyer could help with the fight to get her coverage.

If she were to stay in her current setting after your parents' passing, what would happen? Would the funds be used to provide assistance and she'd be fine? Or is she unable to stay there even with assistance? If she cannot stay, then moving before that happens into another setting would be more compassionate. That way she could at least get used to it. You mentioned wait lists, but I don't think it would be so hard if you were looking at private pay placements. 

Have you read about supported decision making? It would be wise to go ahead and start lining up those documents. She doesn't sound like she needs a guardian yet, but supported decision making and having POA etc. lined up would be wise.

[Hilltopmom]

This sounds really tough. I’m sorry that you’re  going to be the one to figure all this out.

But I’m glad you posted because it’s made me think about actually getting the ball rolling here on OPWDD and making an appt with someone about a special needs trusts. 
 

[Faith-manor]

Is there any medical record still existing of your mom's due date for the pregnancy? If so, then an advocate could compare that to her birthdays to confirm she was a micro-preemie. It might be a jumping off point for establishing that she would have been disabled from birth. There are lawyers out there and advocate that help with these cases. We never thought that a relative of ours who was disabled as a child, but whose parents sheltered her and never established a medical and educational paper trail would get SSDI and services, but a lawyer was able to get it done.

I am so sorry! Hold your ground and remind them that you and your siblings belong to a generation who faces a different set than of challenges than theirs did, and will work full time for more years, later into their lives, have their own health care expenses which cost far more in relation to income compared to older generations, and as a result will not be in a position to care for her. Hopefully you can convince them to set up a trust for your sister. I also hope your other siblings are on board with all of their assets being dedicated to sister. 

Ultimately, you may also have to remember if your mother presses you that "No" is a complete response, and just keep saying it until she finally relinquishes the idea that siblings will be able to care for her.

ETA: My cousin's case was very difficult (2nd cousin and not local so I am not privy to a lot of details). His parents were part of a faith healing group. He was born in the hospital and received hospital care (born at 26.5 weeks) which is why he survived. But once he came home, he was taken to their church for a faith healing service and the rule in the group was that if God did not heal, then it was his will to suffer physical ailments and no other medical care was to be given. So there was just literally nothing. Not even childhood check ups or immunizations. If memory serves, testimony from neighbors about the family and their memories of cousin's childhood and condition was part of establishing the childhood disability. But, I am fuzzy on the details. 

I also wonder if a neurologist evaluation of your sister's muscle tone issues might end up with a diagnosis of cerebral palsy and combined with possibly being able to prove she was a micro preemie would then be enough to prove a birth injury. 

Many hugs.

Edited February 26, 2023 by Faith-manor

[Drama Llama]

She will need to apply for SSI and not SSDI.  SSI is based solely on disability and income.  SSDI is based on disability and work history which she doesn't have. 

It's definitely easier to get SSI when you can prove that the inability to work comes from a disability that was developmental rather than acquired, but it's not impossible to get SSI for an acquired disability.  SSI likes to turn people down, and many people win on appeal, so it's worth getting some kind of advocate.  

It also sounds as though there is room for skill development.  Can you sit with her and make a plan to try and regain some of the lost skills.  Is she getting treatment for the anxiety?  

[Mrs Tiggywinkle Again]

20 minutes ago, BandH said:

She will need to apply for SSI and not SSDI.  SSI is based solely on disability and income.  SSDI is based on disability and work history which she doesn't have. 

It's definitely easier to get SSI when you can prove that the inability to work comes from a disability that was developmental rather than acquired, but it's not impossible to get SSI for an acquired disability.  SSI likes to turn people down, and many people win on appeal, so it's worth getting some kind of advocate.  

It also sounds as though there is room for skill development.  Can you sit with her and make a plan to try and regain some of the lost skills.  Is she getting treatment for the anxiety?  

I think the only reason anyone was even looking at SSI or SSDI was because the group homes or supportive living places here require that someone is receiving one of those in order to be eligible.  She does not receive any treatment, services, nothing.  I cannot overstate how isolated she is.  She literally does not leave the house unless someone is driving her to the animal shelter where she volunteers to walk dogs. Sadly the workers there think she’s weird and don’t really talk to her.  My dad works full time and my mom cares full time for my grandmother at my grandmother’s house 45 minutes away. My sister spends her time reading, writing stories and doing puzzles.  They live in a very rural village setting where there is no place other than the library and a convenience store to walk to and no public transportation.

She does realize she won’t be able to live independently. I am pretty sure the living on my property in a tiny home was my sister’s idea.  She has indicated to my mom in the past that, as Sister is an ardent atheist, that she would be uncomfortable living with the two of our sisters who are very religious(the Scripture hangings on the walls and Christian music playing bother her as she’s very black and white); unfortunately they are the two most likely candidates to be able to help her.  So this tells me sister has considered some of this herself but her executive functioning is almost non existent and she’s not able to manage logistics.

I don’t really have the time to chase this down for my mom. I have my own special needs kids and no margin. I need to convince her that they have to take care of this and start getting her on waitlists. 

Edited February 26, 2023 by Mrs Tiggywinkle Again

[KungFuPanda]

Was it even financially possible for them to prepare very much? They wouldn’t be the first couple to choose more family over financial security. Imagine that raising a very large family on one income leaves very little “extra” beyond survival. There’s only so much one income earner can hustle. Nobody really plans to have a disabled child and if it happens several kids in it can be really tricky. I’m guessing the assets will be attached to the disabled sibling. 
 

I remember there was much more quiverful-positivity on these boards when my kids were tiny. I shudder to think that I could have had 2-3 more kids before my son was diagnosed and if his version of DMD was heritable I could have had more than one disabled son before I even knew what I was dealing with. Still, people do the best they can with the information and skills they have at the time. We make so many of these decisions in our twenties. It’s a little terrifying. 

[Drama Llama]

22 minutes ago, Mrs Tiggywinkle Again said:

 

Did you mean to say something?

[Mrs Tiggywinkle Again]

Just now, BandH said:

Did you mean to say something?

Yes and hit send too soon lol.

[Mrs Tiggywinkle Again]

47 minutes ago, KungFuPanda said:

Was it even financially possible for them to prepare very much? They wouldn’t be the first couple to choose more family over financial security. Imagine that raising a very large family on one income leaves very little “extra” beyond survival. There’s only so much one income earner can hustle. Nobody really plans to have a disabled child and if it happens several kids in it can be really tricky. I’m guessing the assets will be attached to the disabled sibling. 
 

I remember there was much more quiverful-positivity on these boards when my kids were tiny. I shudder to think that I could have had 2-3 more kids before my son was diagnosed and if his version of DMD was heritable I could have had more than one disabled son before I even knew what I was dealing with. Still, people do the best they can with the information and skills they have at the time. We make so many of these decisions in our twenties. It’s a little terrifying. 

They are able to leave her in excess of half a million dollars.  They got wealthy after I moved out lol and have lived very frugally. My mom just doesn’t understand the reality that it won’t be enough when she would need to pay for health insurance and people to assist her, drivers or public transportation, and a place to live for a lifetime. My mom is only just realizing that assisted living is almost always out of pocket.

I remembered that my sister was featured in a couple newspaper feature articles as well as hospital publications during her first year of life. She weighed fifteen ounces at birth and it was a really big deal in 1993.  That may be something that could be used as proof. My mom’s OB-GYN retired in 1995 from a sole practice.  I’m sure there’s no longer any records.

Edited February 26, 2023 by Mrs Tiggywinkle Again

[Longtime Lurker]

1 hour ago, BandH said:

She will need to apply for SSI and not SSDI.  SSI is based solely on disability and income.  SSDI is based on disability and work history which she doesn't have. 

This is not quite correct. If her father is receiving social security, then she can receive SSDI on his record. See link below. For example, my DS24 (severe autism, cognitive delays) receives SSI currently (and has since he turned 18). When DH starts drawing Social Security in a few years, then DS will be eligible for SSDI on DH's record, even though DS has never worked. This will be a higher amount than his current SSI, and will thus replace it at that time.

The following is info straight from the Social Security Administration dated 2023. It is incredibly informative.

https://www.ssa.gov/pubs/EN-05-10026.pdf

[Drama Llama]

1 hour ago, Mrs Tiggywinkle Again said:

I think the only reason anyone was even looking at SSI or SSDI was because the group homes or supportive living places here require that someone is receiving one of those in order to be eligible.  She does not receive any treatment, services, nothing.  I cannot overstate how isolated she is.  She literally does not leave the house unless someone is driving her to the animal shelter where she volunteers to walk dogs. Sadly the workers there think she’s weird and don’t really talk to her.  My dad works full time and my mom cares full time for my grandmother at my grandmother’s house 45 minutes away. My sister spends her time reading, writing stories and doing puzzles.  They live in a very rural village setting where there is no place other than the library and a convenience store to walk to and no public transportation.

She does realize she won’t be able to live independently. I am pretty sure the living on my property in a tiny home was my sister’s idea.  She has indicated to my mom in the past that, as Sister is an ardent atheist, that she would be uncomfortable living with the two of our sisters who are very religious(the Scripture hangings on the walls and Christian music playing bother her as she’s very black and white); unfortunately they are the two most likely candidates to be able to help her.  So this tells me sister has considered some of this herself but her executive functioning is almost non existent and she’s not able to manage logistics.

I don’t really have the time to chase this down for my mom. I have my own special needs kids and no margin. I need to convince her that they have to take care of this and start getting her on waitlists. 

She will need SSI (or SSDI if your father gets SSI) because it comes with Medicaid, and in your state Medicaid is how those things are funded. In addition, there might be services she qualifies for now such as Community Habilitation that will start developing both the skills she needs to be more independent, and the paper trail to prove that she can't live independently.  Have anyone spoken to the office of person's with developmental disabilities?  

Did she get disability services at the school where she got her AA?  Was she there before 21?  They may have some paperwork still.

 

Edited February 26, 2023 by BandH

[Mrs Tiggywinkle Again]

My dad is not drawing SSI. He is technically old enough but has not retired(he says he is which is what triggered this conversation but I am doubtful he actually will; he owns a consulting firm and loves it). I’d be surprised if he ever actually decides to retire.  She is on Medicaid as it’s based solely on her zero income at this point. Community hab would probably be great for her.

She did not get disability services at the community college. I vaguely remember my mom looking into it but as sister was homeschooled they did not have the documentation the school wanted. I don’t know what they did after that; probably nothing as she was able to get Bs and Cs in everything without Assistance. Cognitively, I think she’s pretty intelligent despite a low IQ score on some evaluation as a young child.

The agency my mom went to is what OPWDD uses here.  But when the agency sent out the signed releases for medical information and got none, my mom really just stopped pursuing it and settled on this non plan of “we’ll leave her lots of money and her siblings will step up.”  I had to point blank tell her that zoning laws will not allow me to put a tiny home on my property; we are not going to add on to our home; and I will not be living at my home for the rest of my life because I want to go into assisted living. I do not expect my kids to live close or have the margin to caregive for me, and I will almost certainly need it, and my parents cannot count on me or any of my siblings to help out my sister.

Edited February 26, 2023 by Mrs Tiggywinkle Again

[SKL]

There must be a way to get some proof of past medical problems.  Perhaps a letter from a medical practice that used to serve your sister?  Insurance records?

If your folks sign over her POA to you, I think you would have the right to set her up in an assisted living situation where you could visit as appropriate but not completely care for / financially support her.

I do think her future life path is probably going to be your decision / responsibility.  If I were you, I'd start seeking and keeping her records etc. that you may need in the future.

[Drama Llama]

15 minutes ago, Mrs Tiggywinkle Again said:

My dad is not drawing SSI. He is technically old enough but has not retired(he says he is which is what triggered this conversation but I am doubtful he actually will; he owns a consulting firm and loves it). I’d be surprised if he ever actually decides to retire.  She is on Medicaid as it’s based solely on her zero income at this point. Community hab would probably be great for her.

She did not get disability services at the community college. I vaguely remember my mom looking into it but as sister was homeschooled they did not have the documentation the school wanted. I don’t know what they did after that; probably nothing as she was able to get Bs and Cs in everything without Assistance. Cognitively, I think she’s pretty intelligent despite a low IQ score on some evaluation as a young child.

The agency my mom went to is what OPWDD uses here.  But when the agency sent out the signed releases for medical information and got none, my mom really just stopped pursuing it and settled on this non plan of “we’ll leave her lots of money and her siblings will step up.”  I had to point blank tell her that zoning laws will not allow me to put a tiny home on my property; we are not going to add on to our home; and I will not be living at my home for the rest of my life because I want to go into assisted living. I do not expect my kids to live close or have the margin to caregive for me, and I will almost certainly need it, and my parents cannot count on me or any of my siblings to help out my sister.

I would talk to OWPDD directly, rather than the agency, and look for a psychologist who can do updated testing.  

To qualify in your state (I'm assuming she's in the same state you are?) she will need to either show an IQ below 70 and 2 adaptive scores in the "low" range or an IQ above 70 and 3 "low" adaptive scores, plus a diagnosis that existed before 22.  It's probable that a neurologist or physiatrist would be able to confirm that the CP came from birth injury, and that information can be incorporated into the social history of a neuropsych report.  

But that means that the adaptive scores are going to be critical.  It is not uncommon, when an individual is very sheltered, for the people they live with to overstate their skills on the rating scales, so be sure to talk to your parents about how to be honest, but not overly optimistic.  

 

[Mrs Tiggywinkle Again]

6 minutes ago, SKL said:

There must be a way to get some proof of past medical problems.  Perhaps a letter from a medical practice that used to serve your sister?  Insurance records?

If your folks sign over her POA to you, I think you would have the right to set her up in an assisted living situation where you could visit as appropriate but not completely care for / financially support her.

I do think her future life path is probably going to be your decision / responsibility.  If I were you, I'd start seeking and keeping her records etc. that you may need in the future.

I don’t think there is a POA.  She doesn’t have a bank account and I doubt there has been any situation in my sister’s adult life that would require a POA.  My sister is capable of making decisions about her own life; she is incapable of executing the steps.  For instance she decided she wanted to go to college but needed a lot of assistance to apply, sign up for classes, and those kind of things.  So she could decide for herself that she wants to move out but would need a lot of assistance to make it happen.  If that makes sense. As I said her disabilities are hard to explain or quantify.

I know it sounds terrible, but I told my mom that if there is no plan in place and something happens where they cannot care for sister that I will abandon her at the ED and she will wind up in whatever crappy nursing home has an open Medicaid bed.  That may be the only statement that really gets through to my mom about how important it is that they start working on this.

[Terabith]

I am confused about how she would qualify for a nursing home. She can cook and feed herself. She can dress herself and bathe.  She’s ambulatory and doesn’t have medical issues.  Why isn’t anyone trying to teach her skills like answering phones?  Is she actually disabled or is she so sheltered that she has no idea how to function?  It seems weird that nobody has tried to give this woman the skills to live independently.  

[Drama Llama]

49 minutes ago, Mrs Tiggywinkle Again said:

I don’t think there is a POA.  She doesn’t have a bank account and I doubt there has been any situation in my sister’s adult life that would require a POA.  My sister is capable of making decisions about her own life; she is incapable of executing the steps.  For instance she decided she wanted to go to college but needed a lot of assistance to apply, sign up for classes, and those kind of things.  So she could decide for herself that she wants to move out but would need a lot of assistance to make it happen.  If that makes sense. As I said her disabilities are hard to explain or quantify.

I know it sounds terrible, but I told my mom that if there is no plan in place and something happens where they cannot care for sister that I will abandon her at the ED and she will wind up in whatever crappy nursing home has an open Medicaid bed.  That may be the only statement that really gets through to my mom about how important it is that they start working on this.

I don’t think she would end up in a nursing home, I think she would end up on the street.

[PronghornD]

She should apply for SSI using a lawyer. She will likely be turned down the first time. If so, she can reapply. The lawyer is usually paid out of the first SSI check, which will be extra large because it will include some money for the time between application and approval. Getting on SSI will likely give her access to various other services too.

[kbutton]

13 hours ago, KSera said:

Does she have a formal ASD diagnosis? I can’t recall if you said. That can be sufficient for qualifying for supports, particularly given she’s been unable to work. If she had help from vocational rehab though, they may be able to help her get into a job that would allow her to work in her comfort zone, without needing to answer phones or interact with customers. 

Vocational rehab is usually a somewhat separate track from developmental disability services. It would be something they could potentially get some traction on without needing a million and one records.

[Faith-manor]

37 minutes ago, Terabith said:

I am confused about how she would qualify for a nursing home. She can cook and feed herself. She can dress herself and bathe.  She’s ambulatory and doesn’t have medical issues.  Why isn’t anyone trying to teach her skills like answering phones?  Is she actually disabled or is she so sheltered that she has no idea how to function?  It seems weird that nobody has tried to give this woman the skills to live independently.  

This is often where a hospital ER will attempt turf someone they cannot keep who is not capable of caring for themselves because Medicaid will pay for that but not any kind of other assisted or supervised living situation. This is a reflections n of just how colossally our system sucks!

The parents of Tiggy's sister have not been willing to get the assistance and therapy to help with these life skills. They have all the control at this time. 

[Drama Llama]

I think you need to ask yourself, if it was snowing (because it will) and she was sleeping on the streets, would you continue to hold firm on the line of not letting her live with you?

If the answer to that is no, then I think it’s quite possible that this will end up being your problem even if you have no intention of that happening, and that finding some time to do things that prevent that now, no matter how difficult, might be worth it.

Here are thoughts that I have.  I know I am being harsh and I don’t mean you should do all of this.  

 

1) Find that article, it could be super helpful.

2) See if you can get documentation from the school system people your mom still knows even if it’s just a letter saying that the paperwork was lost but they can confirm that she was tested and qualified for services under X label before 22.

3) Find a neurologist or physiatrist who can confirm some kind of diagnosis like “cerebral palsy secondary to periventricular leukomalacia caused by extreme prematurity”

4) Get POA because without it every agency is going to want to talk to your sister herself.

5) Once you have that, get a neuropsych ($ I know) that includes detailed developmental history from your parents.

6) Make sure your parents know to be brutally honest when filling out the Vineland or other Adaptive rating scales.  If it asks “Can she do X?” And they think “She’s never been asked but I suspect she could learn?”  Then put “No” if they think “she does that all time with family but she gets shy with new people, I bet she’d do it in an emergency” put “with support”‘or “inconsistently” or whatever that form asks for.

5) Get (even if it’s expensive) and advocate to walk through the SSI and OPWDD applications with you.

And in the meantime, sit with her and say “I am afraid for your future, we need to work together to get you ready” and see if you can get her buy in to do things that grow her skills.

1) Can she go with you or a parent or sibling to the grocery store to start learning how to manage that?

2) Can she run errands to the convenience store or the library?

3) Can she take a class at the familiar community college?

4) Can family members call her on the phone to start working on that?

5) Reach out to vocational rehab, ask for a job coach at the animal shelter to help her practice new skills there.

6) Can she be part of the caregiving for your grandmother?  Elder care is a highly needed skill set!  She might be able to find a situation where she is living with someone in exchange for light housekeeping, meal prep and companionship, for example.  Practicing on grandma might help her grow skills.

 

[Drama Llama]

18 minutes ago, Faith-manor said:

This is often where a hospital ER will attempt turf someone they cannot keep who is not capable of caring for themselves because Medicaid will pay for that but not any kind of other assisted or supervised living situation. This is a reflections n of just how colossally our system sucks!

The parents of Tiggy's sister have not been willing to get the assistance and therapy to help with these life skills. They have all the control at this time. 

I may not be picturing things right, but I am pretty sure that the ER’s definition of “can’t care for themself” is altogether different from Tiggy’s.  It sounds like she can’t live alone for lots of valid reasons, but the ER’s definition is going to be more “can she stay alone for a few days without dying” and it sounds like she already stays alone and can handle not burning the house down, can eat food from the fridge, can handle toileting herself etc . . .

[KSera]

1 hour ago, Terabith said:

I am confused about how she would qualify for a nursing home. She can cook and feed herself. She can dress herself and bathe.  She’s ambulatory and doesn’t have medical issues.  Why isn’t anyone trying to teach her skills like answering phones?  Is she actually disabled or is she so sheltered that she has no idea how to function?  It seems weird that nobody has tried to give this woman the skills to live independently.  

I agree with the above that without better planning, she's more likely to be homeless than in a nursing home. It doesn't sound like her issues are ones of being able to live independently so much as being able to hold a job to support herself. That's where vocational rehab (or other supported employment services) could be helpful, but depending on cost of living where she is, it may or may not be a practical goal for her to work enough to support herself without financial assistance. There are services outside the state system that help disabled people find and keep jobs. Some of them are private pay, but others are no fee.

I wouldn't expect someone on the spectrum who doesn't answer phones to be likely to reach the point where a job that involved phone calls was a reasonable choice for them, though. It's more than a skill thing.

[Terabith]

Yeah, I wouldn’t think she’d be a good candidate for being a receptionist, but answering the phone to deal with life emergencies seems like a worthwhile skill to develop.  And possibly she might be able to handle structured phone calls like occasional answering at a vet tech job, where it’s a small part of job responsibilities?  It just seems like she’s been horribly isolated and neglected and so there’s no realistic way to judge what she’s capable of with some work?

 I can’t envision her in a nursing home.  It sounds like she’d be dumped on the street. 

[Drama Llama]

Just now, KSera said:

 

I wouldn't expect someone on the spectrum who doesn't answer phones to be likely to reach the point where a job that involved phone calls was a reasonable choice for them, though. It's more than a skill thing.

I agree with this.  But I think that being able to interact with new people, and by phone, are important skills for other reasons.

She might not grow her skills to the point where she is answering calls in a vets office, but she might get to the point where she can call 911, or she can approach the counter at a pharmacy and ask for a refill, or she can talk to coworkers to the point that they stop avoiding her.  If she was in my class, we’d probably start with in person, but that is going to be hard for Tiggy, phone might be an easier place to start.

[Drama Llama]

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? 

[Ottakee]

Coming in late and haven’t read all responses as I am busy living this life.

thet need to apply for social security.  Get the application started and then search for documentation.    SSA can also hire their own doctors to evaluate her.

Get her on Medicaid if possible

call Community Mental health and ask for services —— they can help with group homes but honestly the weight can be 3 to 5 years so you need to get this started ASAP

have her see her doctor

see if there is a legal aid agency that would work on her case.  Often it is free.

Ask for anyone at a disability network that serves her area.

get power or attorney set up

start a self certified ABLE account 

set up a special needs trust

Honestly, like you know this would have been much easier at 18.   Now it will be a full time job for a while but so important for her future.

I do this in my real life as well as at work with students all the time and it is a lot of work, but getting all of these pieces in Flay can change their future for the better

[City Mouse]

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.