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Off Topic :
Parents of adult disabled offspring


 HFSSC (original poster member #33338) posted at 10:24 PM on Saturday, May 7th, 2022

I know there are a few others on here.

My disabled DS is 30. I’ve shared before that he has epilepsy, intellectual disability and a constellation of symptoms that probably represent some syndrome according to one of the many specialists over the years. He is certified through Disabilities and Special Needs and also has has SSI since he was 18. We did not choose to be designated representative payee for SSI because we did not want to take away the independence that he does have.

Up until this past year I haven’t had any difficulty managing his heath care. He’s had the same neurologist since he was 15. He switched from his pediatrician to a family practitioner who also treated my parents. Last fall he was hospitalized with kidney failure. And I was… I guess surprised is the best word, when he was discharged from the hospital without them consulting me. They had changed his seizure meds because one of them caused the kidney stone that caused the kidney failure. They were discharging him on a Saturday night, one of the meds required a prior auth and they were just sending him home with no backup plan. I had to raise a stink to get the dr called and the meds straightened out.

Fast forward to this week. We saw urology in April and the stone is still there. 1.5 cm in diameter. Scheduled a procedure for yesterday. DS told me on Wednesday night that someone from “Medical Center” had called to say he needed to get a CT scan. He told them they needed to call me to schedule anything. No one did. Then he says “I have to have the CT before my surgery.” 🤦‍♀️ This was Wednesday night at 6:30 pm. So I called Thursday morning and spent an hour calling different departments. Finally I got a call from a urology resident. She said she was the one who had called DS. Turns out that anesthesia scrubbed the procedure because they didn’t want to do it in an outpatient center. Since it was scrubbed, urology decided to get a CT before the rescheduled procedure. DS is not capable of understanding all of that.

Meanwhile, I’ve become disgruntled with his neurology management. He’s been treated at a major teaching hospital since he was a teenager. His previous neurologist retired last year. His new one is booked a YEAR in advance. That’s unacceptable to me. DS’s PCP has referred him to a different group that is a little closer to us. They won’t talk to me because of HIPAA. I called to find out the status and they said they will contact “the patient” when the dr has made a decision whether to see him or not.

I am so damn frustrated. I get it. I understand HIPAA. But I have to be able to manage things like appointments and medical decision making. And the truth is JM and I won’t be here forever and DS is going to need arrangements for his future.

Thank you if you’ve managed to read this far. What do we do? Would a HCPOA give us what we need here? I don’t want him to be “incompetent” legally. I just need to be the default first contact for all of his health care.

Me, 54
Him, 45 (JMSSC)
Married 24 years. Reconciled.

posts: 4701   ·   registered: Sep. 12th, 2011   ·   location: South Carolina
id 8734127

Lionne ( member #25560) posted at 11:34 PM on Saturday, May 7th, 2022

Wow, what a monkey puzzle. I know little about the necessary steps to become his medical spokesperson, but I wanted to tell you what I know about care for adults with special needs.

My son and my sister work for a private agency here in NJ. They actively "recruit" clients for their group homes. The state pays them directly and they are responsible for all the care, from day to day medications, jobs, activities to major issues needing medical care. I have met a number of clients and have found that the agency hires (and pays well) resident assistants who are kind, patient and competent. Both my sister and son started as one of these RAs. Son loved it from day 1, dealt first with higher functioning adults that just needed guidance and is now an RN responsible for medical management of one client each shift. My sister is about to retire from a supervisor position.

A friend with a very impacted daughter reluctantly put her in the program. She is thriving! She's made friends, participates in activities and is always smiling. She is severely autistic and mostly non verbal. This woman is 39, there was a roughish adjustment period, but she is doing very well.

I suspect these programs are state, not federally funded and as such, the programs differ in each state. Still, it would be worth looking into for the future.

Good luck!

Me-BS-65 in May<BR />HIM-SAFWH-68<BR />I just wanted a normal life.<BR />Normal trauma would have been appreciated.

posts: 8481   ·   registered: Sep. 18th, 2009   ·   location: In my head
id 8734139

 HFSSC (original poster member #33338) posted at 12:40 AM on Sunday, May 8th, 2022

Thanks Lionne.

We applied for DDSN (Disabilities and Special Needs) when he was about 19 or 20. Should have done it much earlier but JM and I were often on different pages as far as our acceptance of his limitations. At the time he was approved he went on 2 waiting lists for “waivers”. I’m not sure why they are called waivers but that’s what they’re called. It took about 2 years before he finally got the first waiver. That one provides 6 hours a week caregiver services (which his brother is doing right now), job training and job coach services and some other stuff. He is now within a year or two of the “golden ticket” waiver, by his case manager’s estimate. That one will provide for group home or apartment. I think DS will thrive in either environment. He manages ADLs independently. Does his own laundry. He is very social but also really enjoys his quiet time.

His younger brother has told me that he will always take care of his brother and I know he will. These last few months have just really made it clear that I need to have some things in place to protect him.

Me, 54
Him, 45 (JMSSC)
Married 24 years. Reconciled.

posts: 4701   ·   registered: Sep. 12th, 2011   ·   location: South Carolina
id 8734145

The1stWife ( member #58832) posted at 5:23 AM on Sunday, May 8th, 2022

Speak and meet with an attorney who has experience with this.

Survived two affairs and brink of Divorce. Happily reconciled.

posts: 11862   ·   registered: May. 19th, 2017
id 8734173

Jeaniegirl ( member #6370) posted at 8:50 AM on Sunday, May 8th, 2022

What about getting yourself and your younger son listed as "Medical power of Attorney?" That would surely help with them having to keep one (or both of you) informed about everything.

"Because I deserve better"

posts: 3110   ·   registered: Feb. 1st, 2005
id 8734179

Tanner ( member #72235) posted at 1:49 PM on Sunday, May 8th, 2022

Our Son is 13 and severely autistic. It all started with a rare form of Epilepsy. He is already in the SSI system and on traditional Medicaid.

He is non verbal and at a 2-3 yo level. When he is 17 we will have to file for conservatorship, We have taken the group home option off the table because he cannot tell anyone if was being abused. We will care for him the rest of our lives and our grown Son will take over when we pass.

The medical industry treats you like a second class citizen when you have Medicaid. You get far off appointments and are treated like trash. When he was on a Blue Cross plan I was Mr Tanner and they could see him within a week. On Medicaid you have to wait months, the admin staff is rude and doesn’t care to hear your concerns.

Dday Sept 7 2019 doing well in R
BH 55 WW 48 M 31 years, 4 kids 2 grown 2 grandkids

posts: 1380   ·   registered: Dec. 5th, 2019   ·   location: Texas DFW
id 8734188

 HFSSC (original poster member #33338) posted at 6:13 PM on Sunday, May 8th, 2022

Oh, yes, Tanner. I know ALLLL about the hierarchy in our health care system.

We are blessed that he is covered under my BCBS policy. And he worked enough quarters in his first job to qualify for Medicare and SSDI in addition to SSI and Medicaid.

I just feel like at this point he is not a surgical candidate and most likely never will be. And I’m tired of driving an hour to get to the medical center to just have a medication management visit. I don’t understand why it would take so long for these new doctors to decide about taking him as a patient. And it’s entirely possible they’ve called him or left a message and he was confused or forgot about it.

Conservatorship is exactly the word I was searching for earlier. I think that is probably what we need to do. Thank you.


Me, 54
Him, 45 (JMSSC)
Married 24 years. Reconciled.

posts: 4701   ·   registered: Sep. 12th, 2011   ·   location: South Carolina
id 8734221

tushnurse ( member #21101) posted at 7:13 PM on Sunday, May 8th, 2022

First and foremost using HIPAA as an excuse to not do the right thing or the thing that takes more time pisses me off to a level that borders on rage.

All too often I see pts not get proper care because of this same similar situation. Be it mentally disabled kid and parent with dementia or anyone that lacks the ability to fully understand their care needs and illness. I actually got into a heated discussion with our own DME providers for a pt with dementia it took me 2 weeks to get a bed delivered because they insisted on talking to the demented pt on the phone who declined it 3 times. Meanwhile her 80+ yo spouse was hoisting her up and out of bed daily.

Yes a healthcare POA should help but what is most important is to have the HIPAA forms filled out as you being primary contact. Then notes on the demographic page to call you first for all appt and messaging. Then you call the offices of these providers and speak to the office manager and tell them they are legally liable for any worsening of condition if they call him due to his inability to understand or communicate it back to you.

Him: FWS
Kids: 22 & 25
Married for 30 years now, was 16 at the time.
D-Day Sept 26 2008
R'd in about 2 years. Old Vet now.

posts: 19250   ·   registered: Oct. 1st, 2008   ·   location: St. Louis
id 8734233
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