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Newbie INTRO - Exodus 2/12/2018

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Exodus
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Re: Newbie INTRO - Exodus 2/12/2018

Postby Exodus » Wed Feb 14, 2018 9:11 pm

WOW NF52 – somebody who speaks ADA – thanks so very much for your encouraging/affirming post. And yes – we are very familiar with the systems and resources available for ID/DD folks in our state. It is a long fought for resource that has been providing and paying for the “staff” I spoke about in my intro.

Because my goal for my daughter has always been for her to attain the greatest level of independence possible (until her downhill spiral began two years ago) she has been relatively high functioning – especially compared to others with her same rare genetic disorder. It seems, in my opinion, that might have been the reason she was denied services through multiple application processes over 8 years by the powers that be in our Department of Developmental Disabilities. It didn’t help that she’s held her part-time job for 23 years. They didn’t take into consideration that most of what she does is by rote versus intrinsic comprehension. We finally met someone who understood and overruled the decisions – calling them “unjust” – so now she has one of the most comprehensive waivers available – one with an algo-levels that accurately consider her serious lack of insight/intellectual ability.

I had not heard of the DDPC you mentioned, so searched for it in our state. Interestingly enough the first thing I found was a statement saying that our state became "the most populous state to operate its ID/DD system without reliance on a state operated DDPC.” I didn’t have time to read the entire article, so I’m not sure if the author’s premise was to critique or praise – would be curious to hear your opinion!

And yes – the brochures of every one of the four (4) different providers extol their mission to provide “person-centered” services to disabled individuals and their families – I guess it’s sadly sometimes just a matter of theory versus reality.

I don’t know if you’ve ever considered litigation in any area of your life, but if you have – you know you really need to count the cost before entering into something that you know you’ll have to eat-sleep-breathe for who knows how long – and that it probably means you will be spending a lot more time in phone calls, legwork and paperwork than the attorney and staff. That's how I feel about endeavoring to effect change at this point in my and my daughter's lives right now.

I have lost count of how many “staff” we have had while engaging these 4 providers. They are background tested, drug tested, insured, and physically upright, but poorly educated, and most seem either unable or unwilling to work with my daughter according to her treatment plan goals. All agencies repeat the mantra “if at any time you feel this isn’t working and want to make a change all you have to do is let us know”. Soooo – I’ve done that 3 different times with agencies and several times with individual staff for various reasons – our last staff had RSV and wanted to work even though she had just been released from isolation in hospital and was still contagious. Work to her meant sitting and playing on her cell phone while my daughter watched TV – taking frequent smoke breaks even though she was coughing and wearing a mask.

I guess to me – counting the cost at this point to me means deciding whether I’m willing to die on this hill or not – I’m sure I could go to the ombudsman or to consumer advocates in the media and raise a big stink – but my stress level is down so much now that I’m doing the staffing myself, I just don’t want to rock the boat - not that I won't ever, but not right this minute.

I did sign up at our Protection/Advocacy to get a denial reversed for disabled transportation pass. Our “advocate” found out that the bus company attorney and she had worked together before and chose to stroll down memory lane with her friend that day and accepted another denial as opposed to advocating for us.

My daughter has a tumor in her brain that has caused over 50% deafness, and we’ve moved her to another county so now her bus pass has been approved, but no thanks to P & A ;-(

She had a negative experience in a group home when she was younger so that’s not an option right now. We also investigated several housemate-type scenarios last year, but so many disabled here are on really heavy medication – anti psychotics to be exact . . . yikes! The one person/situation that seemed like it might work the woman needed full-time physical help with wheel chair van, etc. So it would’ve meant changing to another provider that I eventually found out was financially violating her and others in their house.

I do know how the ‘system’ is SUPPOSED to work, it’s just that I’m really weary of trying & trying – non-stop for 53 years ;-) She does have a good recreational therapist and I’m considering engaging another behavioral person – wish it was more acceptable to do that piece myself – getting paid for that would help my budget. I do what I can and my goal is still to have her be as independent as possible so we work on that on a day by day basis! Improved communication skills were the goal yesterday and I did get a positive email from her rec therapist that she followed through with the things we role played before they left!

Sorry for this loooong post, NF, probably should’ve done a PM – but do understand how some of this might help others – wonder if anyone else has my same situation – single mom with disabled adult child?

I would also be interested to know if the system works as it theoretically should where you live and worked – does it only work on paper, or really work in practice?!?

Thanks for listening . . . Exodus

Exodus
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Re: Newbie INTRO - Exodus 2/12/2018

Postby Exodus » Wed Feb 14, 2018 9:21 pm

Hi Searcher . . . thanks so very much for your post – sorry it’s taking me so long to answer.

I was impressed with what you wrote about "40% of eventual dementia being attributable to NON-genetic factors" . . . Is that info in the twin study link you sent? I saw the abstract, but haven’t had time to go further yet . . .

The area where I struggle with most lately is with dairy products – I know we need to only have them sparingly – starting to wonder if the casein has me hooked – I’ve been reading how addictive it is – yikes!?!

I like your term “reasonable calm” – I have felt a little better after taking the Montreal Cognitive Assessment (MoCA)!!! I’m sure my score isn’t as kosher giving myself the test versus having a medical professional give it to me, but it was good to know I didn’t completely flunk ;-)

I’m still working through some of what you wrote – especially the part about the decisions.

The only decision I would have had to make immediately is if I wanted to get the Valentine’s Day sale price on 23And Me – figure that’s not the type of decision you meant, right?
(mona lisa smile)

Getting late . . . thanks again for your post, Searcher . . . Exodus

NF52
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Re: Newbie INTRO - Exodus es nee2/12/2018

Postby NF52 » Thu Feb 15, 2018 5:51 pm

Hi Exodus,
No apologies needed for your post! It was a wonderful description of just how time-consuming and all-encompassing the journey to determine goals, needs, services and supports and then secure funding, providers and transportation can be for families of individuals with DD/ID & especially dual diagnoses. Clearly you didn't need any tutorial on this! In fact, I think it sounds like you've done a great job securing services, since many families find that moving from "mandated" Birth-21 services to "eligible" adult services is incredibly difficult and ultimately far from satisfying. That's especially true for parents of young adults with TBI, autism and those who, like your daughter, have had very enriched and inclusive environments so that they "test out" on measures of daily living needs and supportive work needs.

I'm not sure what your state meant by stating that they don't have a DDPC; in NY the DDPC has been a source of both pushing for consumer involvement and providing funding for innovative programs. I was involved K-12, so was involved with DDSO services mostly for students in community residences and transitional services. I'd say you have a range of programs as good or better than any I've encountered.

As for litigation, I have not voluntarily undertaken it, but was involved in avoiding it (successfully!) as a special education administrator, and always found that listening to parents was job one, and being willing to creatively find solutions was job two. But I also think often parents do not gain enough in the process of actual litigation to mitigate the time, money and damage to relationships that will be ongoing. That's just my personal take.

The fact that you're enjoying the time with your daughter suggests to me that you've found a purpose for yourself, and that both of you will benefit immensely from this time.

Best wishes for many shared memories.
4/4 and still an optimist!

NF52
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Re: Newbie INTRO - Exodus 2/12/2018

Postby NF52 » Thu Feb 15, 2018 5:55 pm

Dear Exodus,
As a P.S., I would guess neurofibromatosis, which I've encountered a few times in my career. I'm guessing that whatever the cause, you've discovered the resources of NORD or similar organizations. I know of several parents for whom groups for parents of rare disorders and/or congenital anomalies have been a source of deep love and support. (Sort of like this forum!)
4/4 and still an optimist!

Exodus
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Re: Newbie INTRO - Exodus 2/12/2018

Postby Exodus » Thu Feb 15, 2018 8:18 pm

NF52 wrote:Dear Exodus,
As a P.S., I would guess neurofibromatosis, which I've encountered a few times in my career. I'm guessing that whatever the cause, you've discovered the resources of NORD or similar organizations. I know of several parents for whom groups for parents of rare disorders and/or congenital anomalies have been a source of deep love and support. (Sort of like this forum!)


Not sure I understand this one, NF52, unless it's a guess about my daughter's diagnosis - it's called Rubinstein Taybi Syndrome (RTS) Recent estimations of frequency range from 1 case diagnosed in every 100,000-125,000 people. And it IS listed on the NORD database with profile fyi! I have been on an RTS listserv for decades, but there aren't many cases in our state, and most participants have now switched to Facebook and I do not partake in standard social media so have lost touch with most of them. It was kinda/sorta tough anyway as most were 20 years younger than my daughter with many in adult strollers and non-verbal so we didn't have much in common. We did participate in a research project, though, for adults with RTS - there weren't many at that point!

Exodus
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Re: Newbie INTRO - Exodus es nee2/12/2018

Postby Exodus » Thu Feb 15, 2018 8:41 pm

NF52 wrote:Hi Exodus,
many families find that moving from "mandated" Birth-21 services to "eligible" adult services is incredibly difficult and ultimately far from satisfying.


PS - really neat thing that has helped us a lot is a discrete department in our Children's Hospital - a whole staff dedicated to making sure people are helped - transition-wise - as they begin to "age out" of the system. The chair of that department has taken a special interest in seeing to it that we get helped as she followed my daughter herself before taking on this departmental project. This is has been impactful for us because in a teaching hospital you have a DIFFERENT provider every time - so it has helped bigtime with continuity of her care!!!

Thanks again, so very much for understanding!!!

Exodus


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