My Daughter is About to Fall off the Disability Cliff

http://www.philly.com/philly/opinion/commentary/medicaid-idd-intellectual-development-disabilities-chops-syndrome-20180629.html

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My daughter is about to fall off the ‘disability cliff,’ and … – Philly.com
www.philly.com/philly/…/medicaid-idd-intellectual-development-disabilities-chops-sy…
4 hours ago – We are as prepared as any family can be for Leta’s upcoming fall from the so- called “disability cliff.” – Lainey Moseley, Philadelphia Inquirer and …

6 thoughts on “My Daughter is About to Fall off the Disability Cliff

  1. lauren Usilton says:

    My husband showed me your article in the paper today. He knew I would want to read it because we too have a daughter who will age out of educational services in April, 2019. Caitlyn, our daughter, went undiagnosed as well until about 4 years ago… a rare genetic mutation, one of about 60 in the world at that time.

    As I think of the future I jump from excitement for what God has for our daughter to tears of terror at all she will lose when school ends. (I am careful of my moods before allowing myself the privilege to think of the future.)

    My Cailtyn, like your Leta, loves school! It has offered her all your Leta had at Camphill. (We had actually looked at Camphill for Caitlyn.) I was a special ed teacher by trade so I knew the outlook early one regarding post-grad services so we too are on any wait list we can find. Our case worker is wonderful but we still feel lost. I don’t know which upset me more… all Cailtyn will lose or the fact that she won’t understand why it is gone.

    I would love to connect with you if at all possible. I don’t know how you have walked your road and worked professionally. (We also have 3 other children.) My thoughts and prayers for Caitlyn’s future will be doubled now to include Leta. Keep fighting… they are all so very worth it… they are our precious treasures.

    • leta123 says:

      Hi Lauren- It sounds like we have walked very similar paths. Would be happy to connect with your further. drop me an email at lwmoseley@comcast.net. Little Acorn House mission is to bring other families into the model, so we should definitely talk! Thanks so much for reaching out. lainey

  2. Mark Davies says:

    My wife, Gill, saw your article online, and there was a tremendous resonance with our position and views, even though we are in another country, England. Our son Joshua has Down’s Syndrome and autism, is aged 21 and attends Coleg Elidyr, a residential specialist college and part of the Camphill family, located in Wales. He has been there for only 15 months, and his progress has been significant – just small steps, but for Josh they are huge, significant leaps. It is everything to do with him living in, what is effectively, an intentional community (not sure if that term is used in USA) with a wonderful ethos staffed by wonderful people. Regrettably, we have come across what you described as an institutional bias against any community outside of the mainstream, and this bias has been demonstrated by our local authority which is the funding authority for our son. Josh is settled in his educational setting for the time being, but we know at some time he will need to move on, as your Leta must do. Our wish for the future is for him to live in the type of community you wrote about so well, a Camphill type intentional community where he has a purpose in life, where he is a young man who is not so different and is just a regular Joe amongst other people. A community starts with one house and a few people. I believe if such a community expands, there will be more variety of choice and opportunity giving a greater chance of achieving long term success in its goals. Our very best wishes that you achieve your hopes and dreams for Leta.

  3. Sher DeGenova says:

    Hello from NJ. Our son John fell off the cliff 2 years ago, and the process has been, and still is, an infuriating one. The public school where he attended high school had no idea of the process, of what awaited him and us after graduation at 21. Funding, and the steps of transition have been in flux over the past 5 years, making it near impossible to gain a handle on what to do, even if parents do their best. The state has closed off ways to contact them. Now we face housing – lack of. It’s been rough. We parents in our town would like to learn how you formed Little Acorn House, and are keeping it funded.

    • leta123 says:

      Hi Sher- there is a short answer and a very long answer to how we formed LAH…I would be happy to provide you with more information and helpful contacts. If you would like to email me directly with questions etc, I can be reached at lwmoseley@comcast.net. thanks for reaching out! lainey

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