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


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


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


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

Update December, 2018:

Below are some updated photos from Eric Feldmann from our Work Group - ArchCare @ Saint Teresa. The construction is going well, and sheet rock is now onsite:

The Garden (future)

The Garden (future)

The project is now gaining some financial attention too with support from:

  • The Staten Island Foundation has given $50,000,

  • An unnamed $25,000 grant from a foundation contact of an ArchCare board member, and

  • The Federal Home Loan Bank of New York awarded the project $243,000, through its Affordable Housing Program. 

Other foundations are now being contacted.

December 2018 Updated Parameters for 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 St. 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.
— ArchCare at Saint Teresa

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;

  • This would be a “non-certified setting” in the OPWDD system;

  • 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.

Original Story:

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:

self direction.png

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 benefit of the population as it will be an excellent model to build on for future projects.


The Brielle on Staten Island - Seniors + Adult Children with Disabilities


The Brielle on Staten Island - Seniors + Adult Children with Disabilities

A number of people reached out to me last week about “The Brielle at Seaview”, an assisted living facility that wants to pilot a co-living program for seniors who are living with and taking care of their adult children with disabilities. “The Brielle has companion suites – two separate bedrooms that have a common dining and kitchen area, as well as a bathroom -- could house spouses, siblings, or parents and children.”

Here is the full story at Staten Island Live and Disability Scoop.

Diane Campione, special needs program coordinator for the New York Public Library, and Diana Thompson, lifestyle and engagement director at The Brielle, hope to get a pilot program off the ground that would ease the burden for seniors who are caring for a loved one with a disability. Campione is the parent of a 22-year-old son with high-functioning autism.

The Brielle, an assisted living facility which has a capacity of 188 that currently operates at 96, is looking to start co-habitating seniors who are caring for an adult child with disabilities in the facility.

“This would be a unique option to keep families together and it has not been available before,” Campione said.
— Disability Scoop
the brielle si.jpg

Needless to say, there will be complications with anything new, but I personally think this is a great idea. From a friend on Staten Island, “Yes I have spoken to Diane, who is mentioned in the article. This could be an option for a parent who requires assisted living care and her developmentally disabled adult child to live with supports. The senior living costs would be over $7000.00 per month (and could be higher depending on variables); and for the adult disabled child they may give a half price deal. I don't think that OPWDD funding could be used at all the way things are designed currently.”

Let’s see where this goes, but it is a great idea.


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


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

November 2018 Update:

We are now taking inquiries for the two residential homes that are owned by Otto Specht parents. There is one female home, and one male home. For more information, please email me.

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
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: 


SDNYC Facebook Group and Meeting on November 7, 2018 at SNACK


SDNYC Facebook Group and Meeting on November 7, 2018 at SNACK

In case you have not seen or heard, I help moderate SDNYC Facebook Group, and our “real world meetings are typically hosted by Jackie Ceonzo at SNACK - 316 E 53rd St, New York, NY 10022-5265.

SDNYC = Self-Direction New York City (area)

This is Self-Direction NYC (SDNYC), which is the “Circle Of Support” group for individuals in the New York State Office for People with Developmental Disabilities. If you live in the NYC area or support individuals in the NYC area, please join us.
— SDNYC Facebook Group


New York Alliance: "What Happens When I Die?"


New York Alliance: "What Happens When I Die?"


Reality #1 - We are in a new world for the Developmentally Disabled in New York, and this is a first attempt to answer complex questions.

Reality #2 - Parents will be the ones who come up with creative solutions.

This is a good overview by John Maltby and Carol Napierski of New York Alliance for Inclusion and Innovation, but this is not a roadmap. Many questions are just starting to be asked.

Support Systems for people with I/DD that were based in congregate care and sheltered work may no longer be desirable or sustainable, however, in some ways they were predictable. As these systems evolve to become more person-centered, families have expressed concern for how to ensure future health, safety and a fulfilled life for their son or daughter in a new world of risk. Our goal in this work is to help people with I/DD and their families understand current systems and think about ways to create “safety networks” addressing changing risks, as options for support become more diffuse and in some ways more challenging. We hope that this work adds to the toolkit available to people with I/DD and their families, and we welcome your feedback.
— John Maltby and Carol Napierski of New York Alliance for Inclusion & Innovation

New York Alliance for Inclusion and Innovation, is an “Agency of Agencies” in New York State, and it serves as a catalyst for positive change and a leading resource for individuals with disabilities, their families, and the organizations supporting them. They do this through: 

  • Advocacy 

  • Education & Training 

  • Technical Assistance & Practice Improvement 

  • Advancing Sound Public Policy


The Center for Discovery: "Brain, Body and the Age of Complexity" - NYC Conference


The Center for Discovery: "Brain, Body and the Age of Complexity" - NYC Conference

Last week I was able to attend The Center for Discovery’s Brain, Body and the Age of Complexity conference in NYC. The focus of the event was on The Center’s new “Children’s Specialty Hospital”, which will provide “short-term, clinical assessment program with the goal of better diagnosing underlying problems that affect behavior and learning. Improved understanding of underlying physiological, medical and mental health problems will lead to more targeted treatments and interventions, all with the goal of enabling children and adolescents to stay at home, in school, and integrated in the community.

The Children’s Specialty Hospital will conduct comprehensive medical and clinical assessments over a maximum of six months. Staff will engage parents, caregivers, and school district personnel as partners in the process. The hospital, scheduled to open in 2020, is expected to save New York State millions of dollars each year, with the goal of replicating this model throughout the state and the nation.”

Follow up from Dr Terry Hamlin:

On behalf of The Center for Discovery, thank you for attending our 3rd annual research conference, “Brain, Body and the Age of Complexity,” at the Hearst Tower last Friday.

We were thrilled to engage with such a dynamic group of researchers, stakeholders, government officials, and community leaders about pressing issues related to complexity and brain health. The groundbreaking ideas that we discussed have implications far beyond our community at The Center for Discovery. We are at the forefront of uncovering life-changing information that will lead to better understanding, more targeted treatments, and new technologies for a great number of chronic, complex conditions—including Autism Spectrum Disorders, Alzheimer’s, dementia, and more.

This conference was just the first step in propelling us even further to being able to help millions of individuals worldwide. We look forward to continued conversations and collaboration with you as we develop our Children’s Specialty Hospital and Research Institute. We welcome your support to advance this important work as well as your feedback.
— Dr. Terry Hamlin - The Center for Discovery

Update October 30, 2018

center for discovery opening.jpg

The Center For Discovery cut the ribbon on their new Children’s Specialty Hospital, Research Institute and Education Academy. Held inside the glass atrium of the old Frontier Insurance building, the event was attended by several elected officials who helped get to this exciting moment in our history at The Center.

  1. The first floor of the building will be converted into an Education Academy, an expansion of TCFD’s existing school program. The academy will allow TCFD to serve at least 42 additional students with complex disabilities from the surrounding communities, including Orange, Rockland, and Westchester counties.  The school expansion will also feature classrooms and a gymnasium, athletic fields, and paved walking and biking paths.

  2. The building’s second floor will house a new Children’s Specialty Hospital, which will be at the forefront of connecting research and innovation. Currently, there are no short-term inpatient assessment programs in NYS for children with complex developmental disabilities. Improved understanding of underlying physiological, medical and mental health problems will lead to more targeted treatments and interventions, all with the goal of enabling children and adolescents to stay at home, in school, and integrated in the community. This sub-acute, short-term hospital is a new model of care that is expected to save the state millions of dollars each year.

  3. The third floor of the building will be converted into a state-of-the-art Research Institute for Brain and Body Health. In partnership with leading national and international physicians, research scientists, academic colleagues, and philanthropic partners, the Research Institute will significantly expand TCFD’s already robust research program.

 If you would like more information on the Children’s Specialty Hospital, Research Institute or Education Academy please go to or contact Vice President of Development Bill Evans at