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:

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 the benefit of Dustin Sweeney down the road. 

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New York Self-Directed Families Survey - Please Help!

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New York Self-Directed Families Survey - Please Help!

New York Self-Directed Families, friends and leaders! Would you fill out this survey about parents' experiences with the Comprehensive Assessment System (CAS)? If there is a consistent indication of concern - prior to its use by CCOs - then all of our networks will have relevant data to bolster our advocacy.

Susan, Shelley, Maggie & Kathleen

NYSELFD


The following is a description and the survey link:

The Comprehensive Assessment System (CAS) is a new tool being used by New York State OPWDD to measure the type and intensity of supports that people  in the OPWDD need. Is it working? If you’ve participated in a CAS, please take this very brief survey and tell us!

This survey was designed by New York Self-Determination Coalition, and is being distributed by advocacy groups across the state.

 

 

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New York State Regional Centers for Workforce Transformation (RCWT): New Portal

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New York State Regional Centers for Workforce Transformation (RCWT): New Portal

As the topic of employment takes on additional importance for the Developmentally Disabled community in New York State, this new portal out of the New York Alliance group could be a valuable tool. 

Employers and employees, please take a look and register. 

The Regional Centers for Workforce Transformation (RCWT) vision is to create a stable DSP workforce in New York State - one that is ethical, competent, professional, and effective in helping people with intellectual and developmental disabilities live the lives they want to their fullest potential.
— Kirsten Sanchirico, Director of Workforce Advancement

The Regional Centers for Workforce Transformation (RCWT) are regional collaborations between service providers, Direct Support Professionals (DSPs), people who receive services and other stakeholders in the field of intellectual and developmental disabilities.  The RCWT are coordinated by the New York State Association of Community and Residential Agencies (NYSACRA) through funding provided by New York State Office for People with Developmental Disabilities (OPWDD).

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 #SharedProsperity: Creating a New Self-Direction Economy @ Invictus Enterprises

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#SharedProsperity: Creating a New Self-Direction Economy @ Invictus Enterprises

#SharedProsperity

The shared prosperity goal captures two key elements: 1) Economic growth, and 2) Equity. Growth is not enough by itself. Improvement in #SharedProsperity requires growth to be inclusive of the less well-off.
— WorldBank.org

THE JOB: As parents of an Autistic son, my wife and I have dreams for Dustin Sweeney and his friends. Dustin has always been very task oriented, and the big question is - How can we apply Dustin's abilities to a work setting as he transitions out of school?

Video #1: Today, Dustin Sweeney is a Professional Dog Biscuit Baker at Invictus Enterprises, and he is getting paid for his work!! Invictus empowers a heretofore untapped work force, and the Team @ Invictus is seizing the day. This video shows what autistic individuals can do in a work setting, and it proves that having a purpose in life creates happiness for the bakers and their parents:

Dustin Sweeney receiving his first paycheck from Alison Berkley & Molly Sebastian! 

Video #2: While the first video offers a feel-good story about the bakery -- we need sales!! The scrumptious artisan dog biscuits are flying 'off the shelves' at the Invictus Online Store, and 'Oscar the Salesman' is selling "NoBones About It" dog biscuits on dog-shop to dog-shop sales calls around New York City:

The "new economy" of Invictus is thriving, and they found supply needed to catch up to demand. To replenish inventory to meet this increased dog biscuit demand, Invictus held a special baking session over Spring Break 2018 in a small industrial kitchen in Manhattan. Here the team was under a deadline and they responded beautifully:

  Fedcap Kitchen - Grand Central

Fedcap Kitchen - Grand Central

  Advent Lutheran Church Kitchen - Upper West Side

Advent Lutheran Church Kitchen - Upper West Side


THE COMMUNITY - Invictus has created the "special sauce" that is very hard to articulate in a Blog post. I often say that "Surfers Healing is my business model" , offering 1-3 day surf clinics for Autistic surfers. Everyone, almost everyone, loves the beach, so that is arguably an easy setting to attract and bring people together to create a community around surf, sand, sun, and fun. But how do you create a community in the "real world" of work? At Invictus, parents, workers, staff, and friends all gather to "bake the biscuits" for 3 hour sessions. In today's world, three hours straight of focusing on one thing is a long time. For the Autistic population, three hours is a REALLY long time. Creating a work-based community may inherently be more challenging to create than one based on surfing...but Invictus is off to a great start:

  Invictus' Moms strategizing next moves outside the kitchen

Invictus' Moms strategizing next moves outside the kitchen

  Team Sweeney gathers @ Invictus' baking session

Team Sweeney gathers @ Invictus' baking session


THE PRODUCT - With absolute conviction, I can say that the "No Bones About It" dog biscuits are a great product! Don't buy them to be supportive of Dustin (but thank-you for the support), buy them because they are awesome and your doggies will love them!!


QUESTIONS - Some questions that are now being raised about Invictus include:

  • How far can Invictus take this?
  • How do we turn this into meaningful long-term employment?
  • What will "Inclusion" and "Integration" look like for the Invictus workforce as they leverage their work readiness and learned job skills and integrate into existing business organizations? 
  • How will paychecks co-exist with SD budgets?

My view is that these are all great questions to have in Dustin Sweeney's life. Dustin has always brought "purpose" to our family, but now I am witnessing and excited about his ability to be genuinely purposeful in his own life. The future looks brighter and the vision keeps growing stronger with every baking session at Invictus:

We are excited for the future, and we continue to explore adaptations, modifications, and the use of technology to enable our work force. Invictus productivity is growing with each baking session and we are convinced that the Invictus workforce will become a viable integrated work force that is productive and sought after. #BeUnconquerable
— Alison Berkley & Molly Sebastian: Co-Founders of Invictus
  Molly Sebastian and Alison Berkley

Molly Sebastian and Alison Berkley

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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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