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Self-Direction

"Self-Direction Saturday" - SNACK* Models Walk The Red Carpet Fashion Show on May 11th @ 4PM

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"Self-Direction Saturday" - SNACK* Models Walk The Red Carpet Fashion Show on May 11th @ 4PM

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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:


The SNACK* 2nd Annual Fashion Show

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

  • SNACK*- Coffee, Student Art Scarves & Gear - All inventory, labeling, & packaging are handled by our wonderful group of  SNACK* 21+ members.

  • 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.


 

SNACK* MODELS 

AS OF 5/2/19*

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Ian Aquino

Shoen Assis

Geri Avilai

Yianni Batalias

George Billson

Ava Blyn

Noah Buhler

Joe Ceonzo

Aiden Del Aguila

Harry George 

Greenlee Gutterman

Ian Gutterman

William Hamilton

Julia Kaminsky

Noko Kurusu

Maxi Lupa

Simon Portelli

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Leo Salinas

Allan Sanchez

Dylan Singer

Dusty Sweeney

Jordan Torres

Justin Torres

Julio A Vega

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Katie Sweeney Podcast with Journey Skills - CO/LAB Theater Group

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Katie Sweeney Podcast with Journey Skills - CO/LAB Theater Group

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:

Journey Skills Podcast - Collaborating for the Future with Katie Sweeney of CO/LAB Theater Group

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.



We have a vision for our daughter, and we want to provide a central hub for like-minded parents and carers. There is an assumption that our children are at the crossroads: left to their own devices they won’t achieve independence or success in their terms; but given the right forethought and input they will be able to reach a certain level of independence and purpose. We live in the land of hope, determination and optimism.
— Debra Caldow of Journey Skills

Other Journey Skills Podcast include:

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NYU Silver Partners with Tech Kids Unlimited + Dustin "Tech Dude" Sweeney

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NYU Silver Partners with Tech Kids Unlimited + Dustin "Tech Dude" Sweeney

I am not sure how it took me so long to discover Beth Rosenberg and her program at TechKids Unlimited:

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:


What’s Next?

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:

Beth Rosenberg (front right) and the TK Hackathon Team

Beth Rosenberg (front right) and the TK Hackathon Team

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Updated: Otto Specht Spring Farm Faire - Saturday April 13th, 2019

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Updated: Otto Specht Spring Farm Faire - Saturday April 13th, 2019

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

Get to work Dusty!!

Get to work Dusty!!

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:

https://www.ottospechtschool.org/farm-faire-1



Music is a daily event at Otto Specht/Threefold.

Music is a daily event at Otto Specht/Threefold.

27 Miles to Otto Specht from Sweeney’s NYC Apartment

 

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CO/LAB Live Annual Benefit - Monday April 22, 2019 - Honoring Katie Sweeney (and Dusty!)

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CO/LAB Live Annual Benefit - Monday April 22, 2019 - Honoring Katie Sweeney (and Dusty!)

HONORING:
KATIE SWEENEY, MATTE O'BRIEN & MATT VINSON

GET TICKETS NOW


CO/LAB’s annual benefit is an exciting celebration of diversity and inclusion through theater arts. Take a behind-the-scenes look at a CO/LAB class in action, and see how their actors’ lessons in the classroom evolve into a live performance. 

Support the work of CO/LAB actors and celebrate Creative Opportunities without Limits And Boundaries—all while enjoying a festive cocktail hour and the opportunity to win incredible raffle and live auction prizes.

This year’s event features a special performance by a CO/LAB class.

 

MONDAY, APRIL 22, 2019
6:30PM—OPEN BAR & LIGHT BITES
8:00PM—PROGRAM

THE HELEN MILLS EVENT SPACE AND THEATER
137 W 26TH STREET / NEW YORK, NY 10001

 
FESTIVE ATTIRE

GENERAL SEATING

GENERAL ADMISSION TICKET—$90

  • Cocktail hour open bar and lite bites

PREMIUM RESERVED SEATING

PREMIUM TICKET—$150

  • Cocktail hour open bar and lite bites

  • One reserved seat in prime location

  • Includes five raffle tickets

PREMIUM GROUP OF FOUR—$500 (BEST VALUE—SAVE $100!)

  • Cocktail hour open bar and lite bites

  • Four reserved seats together in prime location

  • Includes 10 raffle tickets

CORPORATE GROUP OF FOUR—$750

  • Cocktail hour open bar and lite bites

  • Four reserved seats in prime location

  • Includes 10 raffle tickets

  • Ad for your company featured on our event slideshow

  • Shoutout on our social media pages and your logo featured on the event web page

ADD-ON ITEMS

RAFFLE PACKAGE ADD-ON—$20 FOR 10 TICKETS

  • Special, lowest price only available online

TRIBUTE AD ON EVENT SLIDESHOW—$35 FOR HALF SLIDE / $55 FOR FULL SLIDE

  • We’ll be in touch once you make your purchase and work with you to design your tribute ad.

GET TICKETS NOW

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Podcast with Journey Skills: "Possibilities with Mike Sweeney of Carousel 51"

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Podcast with Journey Skills: "Possibilities with Mike Sweeney of Carousel 51"

I met Debra Caldow of Journey Skills via Alison Berkley of Invictus Enterprises, and Alison did a Podcast with Debra here.

Debra is based on the Southeast coast of England in Kent, and they position their Podcast and Blog as:

“We have a vision for our daughter, and we want to provide a central hub for like-minded parents and carers – a place to find resources that will help develop skills around purpose, relationships and daily living skills. Young people with additional needs can achieve many great things, and we want to help them on their path to greater independence.  We aim to provide practical resources to parents and carers to make the journey a bit easier.”

It’s interesting to hear the comparisons and contrast of USA and England for Autism services, and here is my first Podcast (22 minutes):

Podcast Episode 52. Rather than waiting until we have to act the better option is to start exploring what is already out there and start actively working towards creating solutions. This is exactly what this week’s podcast guest Mike Sweeney is doing.

Mike talks about the various projects that he has become involved in as he looks towards finding a community for his son Dustin to live in when he is ready for independent living.

Mike talks about how he has moved from thinking of housing as being the most important focus of his efforts to the realization that work would as he puts it “changes peoples perspective”.

He also discusses how the system in the USA is changing towards young people with additional needs being given more control over their own futures through what is known as self-direction. Mike also reminds us how important integration is in terms of ensuring that our young person with additional needs can have an independent future even when we are no longer around.

Although Mike’s journey is not a unique one, there is much to learn from the way he is navigating his way through the challenges. Listening to Mike’s story will help you as you plan ahead for your own son or daughter’s future independence.
— Debra Caldow of Journey Skills - Kent, England

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Application for ArchCare @ Saint Teresa on Staten Island Part II: Community-based, Family-governed Self-Direction Community

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Application for ArchCare @ Saint Teresa on Staten Island Part II: Community-based, Family-governed Self-Direction Community

Press and Community Event - ArchCare @ Saint Teresa, Staten Island, New York

Yesterday, we invited the Press and Staten Island Community to take a tour of ArchCare @ Staten Island. It was a great day and here are some highlights and updates.


From the Parents Committee:

“One Perfect Day 24/7/365”

Danielle and Izzy Paskowitz in San Diego

Danielle and Izzy Paskowitz in San Diego

When I started down this housing and community path for the Autism/DD community, I always pulled inspiration from our friends at Surfers Healing who create “one perfect day” of surfing for the Autism community. My goal was to create a community that took that surfing spirit into a lifelong community for our Autism and Developmentally Disabled population. The Founders of Surfers Healing have broken ground on a facility in San Diego, California area that will extend their ocean spirit to the Campus of Life.

As Parents, we were all very very excited yesterday about the commitment from ArchCare, Saint Teresa Parish, and the entire Staten Island community to reach in, reach out and truly support this community. There were so many new ideas presented to us about how to make ArchCare @ Saint Teresa work. It was an inspiring day, and we hope and expect ArchCare @ Saint Teresa to be a model for other projects.

Jackie Ceonzo, Susan George, Donna Maxon, and Mike Sweeney


From ArchCare @ Saint Teresa:

Offering housing for young adults with Autism 21 years of age and over, transitioning to independent living, ArchCare at St. Teresa will be located at 139 Windsor Road, Staten Island on the campus of Saint Teresa of the Infant Jesus Roman Catholic Church. The housing is projected to be available in late summer, 2019. It will feature separate apartments with a combined living/dining/sleeping area, a bathroom and a small kitchen with a stove, refrigerator and microwave. A recreation area, community room, teaching kitchen, lounge and laundry will be shared by the residents. The building and apartments will have fire, smoke and emergency response alarms. The building will be fully sprinklered and will have a key fob access system. Residents must be able to live independently. No support services will be provided, but it is anticipated residents may receive services through self-directed funding and from Circles of Support.

A live-in project manager will be responsible of assuring the cleaning and upkeep of the building and will respond to emergencies when he is present in the building. It is anticipated that the Circles of Support will help develop and run group activities. Residents may also have individual staff support through self-directed funding.

ArchCare at St. Teresa will not have 24 hour supervision, but residents can arrange extended supervision through self-directed funding, other resources or by their Circles of Support. Families will be able to work together to develop support systems.


CBS New York Report - Thursday January 18, 2019


Question and Answer from ArchCare:

Why is there a need for special housing for young adults with autism?

The number of young adults with autism among our local parish families and across Staten Island continues to grow, and many worry that they will have no place to go or people to live with as their parents and siblings age. Prompted by concern for these young people and their families, Cardinal Timothy Dolan challenged ArchCare, the non-profit healthcare ministry of the Archdiocese of New York, to identify creative ways to help. When told of the opportunity to repurpose an unused convent building at St. Teresa’s to create individual apartments for young adults with autism, he immediately gave his blessing to the project. 

Why are St. Teresa’s and ArchCare doing this?

It is a way for St. Teresa’s and the archdiocese to put an unused Church property to good use in the way Jesus would want us to – to help members of our community who need and deserve our help, compassion and support.

What is ArchCare?

ArchCare is the non-profit healthcare ministry of the Archdiocese of New York. ArchCare cares for more than 9,000 people of all faiths every day across the archdiocese in their homes, in the community and in its skilled nursing and rehabilitation centers. On Staten Island, ArchCare provides skilled nursing care and rehabilitation at ArchCare at Carmel Richmond Nursing Home, comprehensive home health services, and a PACE program that helps hundreds of people, many with intellectual and other disabilities, continue to live safely and independently in the community instead of in institutions. 

Who will be living at St. Teresa’s?

The residents will be young adults with autism who have “aged out” of programs in their early 20s and are capable of living safely and successfully with the level of independence the residence will require. Some will likely have jobs in the community, while others may leave to attend classes or other programs during the day. Their families will continue to be involved in their daily lives and, together with the residents, will be responsible for arranging for any services they might need, such as transportation personal assistance. While the focus is on young people with autism, those with other developmental disabilities who are capable of living safely with the degree of independence the residence will require may also be considered.

Where will the residents be from?

The initial goal is for half of the residents to come from within Saint Teresa’s Parish and 50% from elsewhere. Typically, they will have been living at home with their families and will be living in the community for the first time. As a condition of residency, their families will agree to continue to be active in their lives and commit to serving as members of a family council, who will work together to ensure that residents are successful and address any issues that may arise. That’s why ArchCare is referring to this as community-based, family-governed housing.

How will residents be selected?

Residents will be selected by a panel of autism advocates and other experts with experience working with young adults with autism. Residents will have to meet specific criteria, including: 

  • Residents must capable of living safely with the degree of independence the residence will offer;

  • Residents’ families must agree to continue to be involved in their lives and their care for the foreseeable future and serve as members of a family council who will work together to represent their loved ones’ interests as necessary;

  • The residence must be an environment in which residents can continue to thrive socially, emotionally and intellectually.


Is the building being enlarged or changed in any way?

The building is not being enlarged, and the “footprint” will remain exactly the same. The renovation will mainly be taking place inside to bring the building up to code and create the individual apartments and common living spaces. 


How much will this cost St. Teresa’s Parish?

Absolutely nothing. The estimated $2.5-3.5 million cost of construction will be covered by ArchCare and other funding sources. ArchCare will lease the building from the parish under a long-term lease and assume responsibility for all maintenance and repairs. St. Teresa’s will receive a regular stream of income in the form of fair market rent for the property, and will no longer face the risks and costs of maintaining an unused building or finding other tenants. 


Is ArchCare looking to create similar residences elsewhere?

Not immediately. The hope is that St. Teresa’s will serve as a model that can be replicated not just by other parishes but also by others in the community with space to offer and the desire to help. 

What is the timeline for the project?

ArchCare announced the project in mid-2017 and construction began in early 2018. Current projections call for the renovations to be completed in July 2019 and for residents to be able to begin moving in by September. Applications are currently being accepted, and resident selection will take place in May. 

Do residents have to be Catholic? 

The residence will be open to people of all faiths. Of course, residents who would like to attend Mass will always be welcome at St. Teresa’s.

Will any residents be coming from institutions?

The residence was conceived and is being designed as transitional housing to help individuals with autism who have been cared for at home live away from their loved ones for the first time. The goal is to provide a comfortable, homelike environment in which they can develop the skills and relationships they need, and perhaps be able to live in an even more independent setting in the future. 

Will there be a caretaker or other staff on-site?

There will be a full-time project manager who will be responsible for the maintenance and upkeep of the building and will respond to emergencies when present.

What kind care and other services will ArchCare be providing? 

This is a residence, not a care facility. ArchCare’s role will be that of a landlord. Some residents and families may choose to obtain services from ArchCare programs, but that would be up to them and is not required to live at St. Teresa’s. 


Update: Spectrum News NY1 - “Adults With Autism Can Soon Call Former Staten Island Convent Home”


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