We are in the process of transitioning Dustin to his 21+ life, so I am on a sabbatical from posting these days. I will circle back in the fall. For now, here is Dustin learning to caddy on the way to SNACK, hanging on Governors Island, and shopping at Wegman’s on his way home from the Otto Specht Farm:
Sitting at Special Needs Mass at Blessed Sacrament Church yesterday with Jackie Ceonzo of SNACK*, it dawned on me how much I/we take her for granted in the Self-Direction community of NYC. Besides the support for SNACK*, this event is also an opportunity to meet many of the Self-Direction programs and community that we all need to understand better. Here is the opportunity to join SNACK* for a fun day of shopping at:
Fabulous gift items for Mother's Day, and pick up a few things for
yourself too! Wonderful array of items will be on display:
Endeavor Athletic Wear - Sophisticated Workout Clothes for the Modern Athlete
Kuo Ting Jewelry by Debbie Kuo - Vintage Meets Modern/One-of-a-Kind Pieces/Amazing Prices
Marie Atelier Handbags - High Quality/Special Collection/Handmade in Brazil
Goodthin.gs - Fashionable Sneakers by Branding Genius Jeff Henderson
LuvMichael - Gluten & Nut Free Granola, Produced by Young Adults with Autism
Invictus Enterprises - Sweet Potato, All Natural Dog Biscuits, Hand Made by Young People of all Abilities
Village Health Works - Items Produced in Burundi Supporting Quality Health Care and Education for the Community
The Otto Specht School and 21+ Community - Offers Waldorf Education and hands-on learning for children and 21+ young adults with learning challenges and developmental delays. They will be selling student-made items featuring ingredients from our farm in Rockland County.
AS OF 5/2/19*
Aiden Del Aguila
Julio A Vega
The world gets smaller and smaller for our Autism and Developmentally Disabled communities, and we continue on the journey with Debra Caldow of Journey Skills, which is based in England. Debra has a new Podcast with my BBW (Beautiful Broadway Wife) Katie Sweeney:
In this episode, Katie Sweeney, a parent and board member of the CO/LAB Theater Group in New York, talks about her individual journey and the role musical theater has played not only in her life but also her son’s life.
Katie talks about CO/LAB and how they help individuals with developmental disabilities change the way they see themselves and, through reaching out to the wider community, change the way others see them as well. Here collaboration is about bringing people together and using everyone’s individual strengths to create something more than one person alone can create. Katie also talks about the wider impact that finding and building a collaborative community around her son has had when it comes to planning and imagining what the future might be like.
The timing is perfect as Monday night is the CO/LAB Live Annual Benefit - Monday April 22, 2019 - Honoring Katie Sweeney (and Dusty!)
Tech Kids Unlimited is a not-for-profit technology-based educational organization for kids ages 7 to 21 with special needs. Our program was created specifically to work with students with IEPs and 504 plans.
In part with funding from the NYU Community Fund, the organization now serves over 350 young people with autism spectrum disorder, learning and emotional disabilities, and processing challenges. It offers distinct programming for kids ages 7-13 and teens ages 14-21, with the former focused on learning computer science principles and developing bonds with like-minded peers and the latter focused on applying their knowledge through work-based learning experiences to gain job skills. More.
Dustin Sweeney @ Tech Kids
Dustin Sweeney has attended two classes at Tech Kids:
As I get deeper into the programming and jobs for the 21+ Autism/DD population, I am amazed at Dustin’s interest and abilities. As the father of a “Low-Verbal Autistic”, my expectations were low for these two classes. Dustin loves YouTube, but I was not sure he wanted to try programming and development. Wrong Again! Dustin was clearly engaged and Beth and her staff gave Dustin as much attention as he needed, and they gave us leeway to shadow Dustin at the two classes.
It is an awesome atmosphere at NYU. Director of Operations Cristina Ulerio and the Tech Kids staff are great with our population. They find that delicate line of support, engagement, and discipline to focus the students on the task at hand. For two days of his life, it felt like Dustin was at college:
So I started the conversation of 21+ Programming and Jobs for our population with Beth, and with a 20 year old son in her house, Beth and the Board of TKU are looking at ways to expand TKU Digital Agency. How and when (not if!!), so stay tuned. Beth is just a natural at the “Integration Model”, as she just blends in herself:
Here are some updated pictures from today’s Otto Specht Faire, and Thursday’s setup. It was a great day(s), great place, and great people at Otto Specht.
Original Post from March 2019
I am on the Board of the Otto Specht School in Rockland County, NY, and it is a very unique and special place. Otto Specht is on the campus of the 200 acre Threefold Community, and we are at the beginning stages of building out:
Otto Specht 18+ Summer Camp for Commuters;
Otto Specht 18+ Young Adult Commuter Program; and
Otto Specht 21+ Residential Program (three homes have been purchased by Otto Specht families).
The Spring Faire is a casual opportunity to see the campus and potentially meet some of the staff, students, and the surrounding community. It is a really unique and special place and I will be there along with Dustin Sweeney on April 13th, so come check it out and see my previous writeup on Otto Specht/Threefold for additional background:
27 Miles to Otto Specht from Sweeney’s NYC Apartment
This was really good news from Madison House Autism Foundation:
Dear AHN members,
We are thrilled to announce our advocacy efforts are a success thanks to you! Watch the short video below to learn more.
Check out this Psychology Today article about the new guidance that quotes the Autism Housing Network Project Leader, Desiree Kameka.
View the NEW guidance which supersedes the “Settings that Tend to Isolate” guidance from 2014 here.
Some of the highlights of this new guidance include:
The new guidance is outcome-oriented and focuses on the settings facilitation of community engagement as described in one’s person-centered plan.
The role of an individual’s person-centered plan is paramount in guiding services, their home preferences, and access to the greater community. Make sure yours meets the federal requirements using this HCBS Final Rule Person-Centered plan checklist.
Settings described in previous guidance are no longer presumed institutional nor isolating and will no longer be forced to go through heightened scrutiny if the state determines the setting is compliant with the HCBS Final Rule.
Settings previously submitted for heightened scrutiny may no longer need to go through the heightened scrutiny process if the state determines it is compliant or can become compliant by July 2020
Consumer-controlled settings are presumed compliant.
What can you do?
Reach out and thank the policymakers. The importance of making our collective voice heard should not be underestimated. Melissa Harris of CMS is a good place to start. She is in the Disabled and Elderly Health Programs Group, her email is Melissa.firstname.lastname@example.org.
Make sure your Person-Centered Plan meets federal requirements if you plan to use HCBS waiver funding. You can also visit the Autism Housing Network Resource Directory and use the ‘Topic’ filter on the right to find ‘Person-Centered Planning’ tools and materials.
There is another piece of CMS guidance that needs attention. Guidance on the planned construction of future housing solutions emphasizes that the Medicaid authority cannot give pre-approval that residents will be able to use their waivers before the housing is constructed and or operational. Join our advocacy wing, the Coalition for Community Choice, for updates and future action alerts (I promise we won’t swamp your inbox!)
The impact of this change cannot be understated. Homes of people who have disabilities stigmatized in the previous guidance were going to be unnecessarily scrutinized, an expensive process that could have instilled confusion, fear, and anxiety in residents. Now, people’s homes will not be forced by CMS to go under investigation and they can live without fear of removal from their home.
So what’s next?
Now more than ever before we know that our voice is stronger when we come together. Please join us as an advocate or a donor as we prove that we CAN make a difference and have a variety of housing options to find the best fit for every individual.