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Is the Otto Specht/Threefold Community the 'Integrated' Model We Have Been Looking For?

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Is the Otto Specht/Threefold Community the 'Integrated' Model We Have Been Looking For?

Over the past few years, the Developmentally Disabled community has heard chatter from Albany and Washington stressing 'Community Inclusion' and 'Integration'. The intent is to enable the Developmentally Disabled to live in an integrated environment rather than an isolated or 'intentional' community. There are two key benefits to an 'integrated model':

  1. It is better for a majority of the Developmentally Disabled population (recognizing, though, not all will be able to integrate);
  2. It is a less expensive model for New York State taxpayers. 

But what is integration, and how do we implement it without it being forced on but rather welcomed by society in a symbiotic, mutually beneficial relationship? The reality is, nobody really knows. NYS OPWDD presents a broad and very generic outline on their Most Integrated Setting Coordinating Counsel (MISCC) page

With thanks to our friend and Self-Direction Broker Ken Siri, we recently visited the Otto Specht School and the larger Threefold Community in Chestnut Ridge, NY (Rockland County), situated on a 200-acre campus just a few miles west of the Palisades Mall. 


The mission of the Otto Specht School is to make possible a self-sufficient and positive future for children with developmental delays, learning challenges and sensory imbalances who do not thrive in a typical classroom setting. To this end we provide innovative educational programming, based on the methods of Waldorf education, in a safe environment where therapeutic, social, and academic needs are addressed.
— Otto Specht website
otto specht 7.jpg
  Jeanette Rodriguez - Program Director of Otto Specht School

Jeanette Rodriguez - Program Director of Otto Specht School

Programs at Otto Specht include:

  1. Early Childhood
  2. Grades 1-12
  3. Vocational Arts Program (grades 9-12)
  4. Transitional Life Skills Program - offered for students who have completed High School and require a post-secondary program to build the practical, vocational, and social skills needed to successfully navigate their path towards independent living.

The Transitional Life Skills Program is growing, a reflection of obvious demand. Two Otto Specht families have purchased homes on the periphery of the campus for their adult children to potentially share with other adult residents. Other housing models are also being discussed. 


The task of Threefold Educational Foundation is to support and maintain a living community of practical work inspired by the teachings of Rudolf Steiner. The Foundation provides the spiritual basis for work arising from anthroposophy in the Threefold community.
— Threefold Foundation website

There are a many programs at the Threefold Educational Foundation, listed here

felloeship community.jpg

One potential key to solving the 'integration question' for our Developmentally Disabled community is The Fellowship Community, a 501c3 separate from Otto Specht and Threefold. The Fellowship Community consists of "150 elderly persons, children and coworkers [that] live in a rural setting of farm, woods and orchards. Working and learning together in service to others and in caring for the earth is the central motif of the community life. The Fellowship Community operates the Duryea farm, a mixed vegetable production which also includes an apple orchard, dairy herd and on-farm dairy."

Eureka!! We have finally found a truly integrated community where elderly, neuro-typical, and developmentally disabled embrace the opportunity to live and thrive together in an established working community less that 40 miles from New York City. Now, how do we expand and replicate this model and its mission?


Fundraising for New Building at Otto Specht School & Community

Otto Specht's existing classrooms are temporary, rented spaces within the Threefold and Fellowship Communities. They have started a $16.7 million fundraising plan for a new building on the campus:

otto specht school.jpg
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otto specht 5.jpg

From the Otto Specht website, "The building's two wings embrace the landscape and invite the beauty of the surrounding region into the building, while simultaneously bringing the inside "out" through frequent opportunities for engagement with the outdoors. A central lobby connects the two wings on the first and second levels, welcoming students, parents, and visitors to a light-filled community space at the heart of the building. The building will be located at the junction of a natural landscape, a biodynamic farm, and our therapeutic herb garden. The buildings' forms are attenuated, stretching voluminously over the landscape, as though they were pulled and twisted into being - infusing the environment with kinetic energy."

For additional information on the school building project, please see the Otto Specht fundraising page

For additional information on Threefold, see their website and their annual report below: 

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JCC Manhattan Focus Groups for Parents of Young Adults with Disabilities - Allison Kleinman

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JCC Manhattan Focus Groups for Parents of Young Adults with Disabilities - Allison Kleinman

  Allison Kleinman - JCC Manhattan

Allison Kleinman - JCC Manhattan

Allison Kleinman, LCSW is the Director of the Center for Special Needs + Adaptations at The Jack and Shirley Silver Center for Special Needs at the Marlene Meyerson JCC Manhattan. In her creation and spearheading of the department, Allison's focus has been on developing individualized paths for all people to connect to community and achieve their potential for independence.

With Allison's permission, I am posting the summary of her Focus Groups that were conducted by the JCC. All of the Center for Special Needs programs are open to the broader community.

In late May 2018, Allison also led a group of JCC families from The Silver Center for Special Needs to Israel for a week long trip to explore and study different housing models and philosophies in hopes of developing new ones here in NYC.


Focus Group Summary and Recommendations

Participants

Two focus groups of parents of young adults with Intellectual and/or Developmental Disorder (IDD) and/or Autism Spectrum Disorder (ASD) were organized and led by the JCC’s Center for Special Needs (CSN) staff on April 18th and April 23rd, 2018 at the JCC Manhattan. In total, 18 parents of 16 individuals participated. The age range of the young adults whose parents attended is 16 to 35 with the majority in their early twenties. They all currently live with their parents, mostly in NYC. 

Focus groups: 

The goals of the groups were: 

(1) To better understand the social and recreational needs of the families served;

(2) To provide information on existing resources that may address some of these needs; and

(3) To facilitate the formation of connections between the parents.

Main findings: 

The central theme present in both focus groups was frustration and concern regarding the two inevitable transitions for each family present:

  • The immediate transition from relying on the special education school system to identifying, obtaining and/or creating services and programs for adults with disabilities. Several parents reported that navigating the associated bureaucratic complexities and finding suitable services places a considerable burden on them of time, knowledge and financial resources. Many parents spoke of the scarcity of services suitable for their children’s needs.
  • The second principle concern was regarding the availability of support systems in the future when the parents will no longer be able to care for their children. 

Recommendations and Potential Directions:

The needs and hopes shared in these two focus groups and in the survey reflect an underlying feeling of loneliness and disconnectedness from society that the young individuals (and sometimes parents) experience, as perceived by their parents, now that they are transitioning into adulthood. 

The concern for future support that will assure that their children’s lives continue to be engaging and meaningful now and when parents will no longer be able to oversee it is great and valid and should be given considerable attention in planning sustainable and/or scalable programs and services.

Addressing these needs can be done in a number of ways including:

  • Establishment of a forum / task-force / opportunities for professionals and family members to share information and collaborate with each other.
  • Development of long-term half/ full day programming focusing on recreational/social and vocational opportunities in a variety of settings.
  • Development and training of natural supports within the community, including community habilitation workers, job coaches, peer mentors/social companions, inclusive programming and volunteer opportunities.

Appendix 1

Prior to the group sessions, a survey was sent to parents who had contacted the CSN JCC staff regarding programming and opportunities for their children. Twelve out of the 14 survey respondents also participated in the groups. The survey found that only 15% of the respondents were satisfied with their children’s social/ recreational life. The predominant unfulfilled needs were related to social programming and friendship opportunities. More detailed demographics and survey responses are listed below. 

jcc data.png

Appendix 2 - The needs, hopes and specific areas of interest expressed by the parents include

Immediate needs:

Full/half day Post-21 programming where interests and social needs are addressed. 

  • Structured opportunities for socialization in order to create meaningful and age-appropriate friendships in contained and inclusive settings. 
    • Structured recreational and social programming suitable for individuals who need a higher level of support, such as individuals with limited verbal communication, behavioral issues or physical disabilities.
    • Particular areas of individual interest mentioned: culinary, pottery, fashion, theater groups, social skills, art and culture.
    • Programming focused on wellness: healthy habits and choices in nutrition, fitness, etc.
  • Vocational training and long-term supported job placement programs.
  • Travel-training support to enable participation in activities.
  • Becoming part of New York City society through engaging with the many cultural opportunities the city has to offer and developing a sense of belonging, as well as a greater level of independence and confidence in the city environment.
  • Inclusive programming involving peer mentors. 
  • A forum to share and receive updated information regarding services and to advocate for needs.

Future needs:

  • Sustainable long-term housing solutions.
  • Continued education opportunities in formal and informal settings.
  • Promotion of self-advocacy skills.
  • Programming developing independent living skills, focusing on Instrumental Activities of Daily Living (IADL) such as managing self-finance, shopping and meal preparation, household maintenance, etc. 
  • Programming related to sexuality and intimacy.

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May 31, 2018 - Spectrum Designs Film Event: "This Business of Autism"

May 31, 2018 - Spectrum Designs Film Event: "This Business of Autism"

I was able to make a site visit out to Spectrum Designs this week, and it was an awesome tour of their new facility with COO Tim Howe. I will have a longer and more detailed post about the business after they have the Premier of their new film, "This Business of Autism" on May 31, 2018 in Port Washington, Long Island, New York:

This Business Of Autism is an expository documentary film about the economic and societal benefits of employing young adults with autism. Spectrum Designs is a custom screen-printing and embroidery business located in Port Washington, New York. 75% of Spectrum Designs’ employees are on the autism spectrum.

Centered on the acquisition, renovation and launch of their new production facility, which will triple their production and staffing capacity, the film will address the positive impacts of developing profitable businesses while leveraging the unique capabilities of adults with autism. By confronting head-on the reality that an estimated 70% to 90% of these adults are unemployed or underemployed, these businesses can also provide large companies with an avenue for corporate social outreach, mitigate the economic impacts on local communities of housing and caring for adults with autism, and provide hope for families that their children might have sustainable, relevant and stimulating employment opportunities.
— Spectrum Designs May 2018

 

 

ArchCare @ Saint Teresa - Former Convent to be Special Needs Community - #Self-Direction

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ArchCare @ Saint Teresa - Former Convent to be Special Needs Community - #Self-Direction

Updated May 3, 2018

  • The name is now "ArchCare at Saint Teresa";
  • Asbestos removal has begun on the building;
  • New move in date is summer of 2019;
  • ArchCare at Saint Teresa will have a booth at the JCC of Staten Island Special Needs Resource Fair on May 11, 2018. Thanks to Senator Andrew Lanza for the support to our community,
  • Applications to ArchCare at Saint Teresa will begin this summer of 2018 at the Autism Housing @ ArchCare website. Offline applications will be accepted too. 

  Saint Teresa's Convent, Staten Island, NY - Summer 2017 - The "Before"

Saint Teresa's Convent, Staten Island, NY - Summer 2017 - The "Before"

  Saint Teresa's Gym - separate building from The Convent

Saint Teresa's Gym - separate building from The Convent

  Saint Teresa's Church

Saint Teresa's Church

  Monsignor William Belford - Saint Teresa's Parish

Monsignor William Belford - Saint Teresa's Parish

How do you implement "Self-Direction in the OPWDD System"in a residential community, and how do you make it great? ArchCare, The Continuing Care Community of the Archdiocese of New York, is converting a beautiful building at Saint Teresa Parish on Staten Island for our Special Needs population. 

For those that are not familiar, "Self-Direction" is a big shift for the Developmentally Disabled community in New York State and the USA. Many parents and many agencies are concerned about these shifts of empowering individuals over institutions:

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Based on personal experience from our son's after-school programs, we are big fans of "Self-Diection". We also realize that it will not be a fit for everyone, but our friends at ArchCare are giving the Self-Direction population a huge head start on Staten Island.*

ArchCare cares for people of all ages and faiths where they are most comfortable and best able to receive it – at home, and in the community. As the Continuing Care Community of the Archdiocese of New York, we see enhancing the lives of our elders and others who need extra help to stay healthy and live life to its fullest as more than just a job. To us, it’s a privilege and our calling.

It is still early in the process, and I am on the a Parent's Committee working with ArchCare and Saint Teresa Parish. This community has real potential to serve as a model for our Self-Direction community. Watch the NY 1 report from this summer:

The initial game plan is for:

  • 10 studio apartments, each with their own kitchen and bathroom.
  • There will be 2 apartments for staff and 8 for residents.
  • There is an existing beautiful kitchen and dining area where residents can invite parishioners, neighbors, and friends into OUR community and we will serve them meals and entertainment!!
  • The building has common areas for community events and employment programs. 
  • Outside independent programs and employment for residents are supported.
  • Our goal is to have collaboration with GrowNYC and similar groups to have "farms" on Staten Island. :) Yes farms on Staten Island!! Ok, it is more like a small garden, but we want our population to live the "farm to table" lifestyle. 
  • Saint Teresa's also has a school, gym, huge common area, and the church that our population can integrate with. 
  • ArchCare is contributing $2.5 million in capital improvements to the former Saint Teresa's Convent building, and they are taking below market rents on a 40 year lease to match OPWDD rates. 
  • Target move-in date - Summer 2019.

This will be complicated, fun, and it will fill OUR lives with purpose. I am very excited by the commitment from ArchCare and the Parent's Committee, and thanks to Jackie Ceonzo of SNACK NYC for inviting me to this group. I believe that ArchCare @ Saint Teresa will be a catalyst for additional facilities in NYC and Upstate in the ArchCare system. More to follow in the coming months, and I am genuinely grateful to ArchCare's CEO Scott LaRueCardinal Dolan, and Monsignor William Belford of Saint Teresa's Parish

* Dustin Sweeney will not be a resident of ArchCare at Saint Teresa, but I am very motivated to make this work for the benefit of Dustin Sweeney down the road. 

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Open Society Q&A: What Real Inclusion for Nonspeaking Autistic People Means

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Open Society Q&A: What Real Inclusion for Nonspeaking Autistic People Means

Inclusion means having a voice in one’s life.
— DJ Savarese @ Open Society Foundations
  DJ Savarese

DJ Savarese

As we define the word "INCLUSION" in the Developmentally Disabled community, this article really resonated with me as our son is "low-verbal". In our daily lives with Dustin Sweeney we:

  • Presume competence;
  • Know that lack of spoken language is not the same as having nothing to say.

But it was not always this way for us as a family.

Please see the full article here. 

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Museum Access Consortium (MAC) - Two Events - Friday April 6 and Saturday April 7, 2018

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Museum Access Consortium (MAC) - Two Events - Friday April 6 and Saturday April 7, 2018

  MOMA

MOMA

Friday, April 6, 2018
9am-5pm
The Museum of Modern Art

Register (Click Here)

  Emily Batsford, Katie Sweeney, Mike Sweeney, and Arielle Lever discussing our favorite CO/LAB Theater Group Actor - Dustin Sweeney

Emily Batsford, Katie Sweeney, Mike Sweeney, and Arielle Lever discussing our favorite CO/LAB Theater Group Actor - Dustin Sweeney

Join the Museum Access Consortium for a day of learning and progress for welcoming and engaging adults with autism and developmental disabilities. Developed for professionals from cultural organizations, this symposium will offer professional development related to all aspects of engaging this population from building community and welcoming audiences and visitors to building more inclusive staffs through internships and employment opportunities. Learn from individuals with developmental disabilities, cultural organizations who have pioneered work in this area, funders, and service organizations. This symposium is part of the Supporting Transitions project, funded by the FAR Fund.  

Katie Sweeney will be a speaker at the 9:30 AM session on "Welcome and Panel: Building Community". Katie sits on the Board of CO/LAB Theater Group, and they will be on the 10:30 AM panel "Best Practices for Welcoming Adults Developmental Disabilities". 

I will be attending this event with Katie Sweeney. - Mike Sweeney.


  The Met

The Met

Supporting Transitions Symposium
for Adults with Developmental Disabilities

Saturday, April 7, 2018
10am-1:30pm
The Metropolitan Museum of Art

Register (Click Here)

 

Join the Museum Access Consortium for a day of learning. This workshop, designed for adults (ages 18+) with autism and other developmental disabilities, will introduce individuals to various opportunities for getting involved in New York City’s cultural organizations. Those new to attending cultural organizations can sample the Metropolitan Museum of Art’s Discoveries Program, an interactive recreation program where attendees have the chance to explore the museum and make art in a hands-on, guided program. Attendees interested in future career opportunities can attend the workshops focused on internships and employment. Those interested in becoming artists and performers can experience an audition workshop or portfolio workshop. This symposium is part of the Supporting Transitions project, funded by the FAR Fund.  

I will not be attending this event - Mike Sweeney. 

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Monday, April 16, 2018 - UJA-Federation of New York Conference - Exploring Housing Models....

Monday, April 16, 2018 - UJA-Federation of New York Conference - Exploring Housing Models....

This looks like a very interesting conference for our population and I will be attending.

Mike Sweeney


Fostering Independence and Enhancing Well-Being for Adults With ASD: Managing Anxiety, Exploring Housing Models, and Participating in Sports.

Parents, professionals, advocates, and other interested community members are invited to learn about the latest research and innovative program models available for individuals with autism as they navigate adulthood.

Monday, April 16, 2018
8:30 am – 4:00 pm

UJA-Federation of New York
130 East 59th Street
New York City

Charge: $30 per person.

Great news! Five continuing education contact hours are available for social workers who attend the symposium in person. Please complete registration by April 1, 2018, to be eligible for continuing education credits.

Meet our Presenters
See our Program.
Learn how social workers may earn five continuing education contact hours.

Attention Jewish Communities Around the Country:

UJA-Federation of New York will broadcast the Hilibrand Autism Symposium nationally via webinar to Jewish federations and Jewish community centers throughout the country.


When

  • Monday, April 16, 2018
  • 8:30 a.m. - 4:00 p.m.

Where

  • UJA-Federation of New York
    130 East 59th Street (between Park and Lexington Avenues)
    New York City