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Katie and Dustin Sweeney: CO/LAB Theater Group and the NYC Marathon

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Katie and Dustin Sweeney: CO/LAB Theater Group and the NYC Marathon

I normally shy away from talking about Dustin directly on here, but he is why I am here and this was a great film by Katie and Dusty for the benefit of our friends at CO/LAB. Many of you have not heard Dustin speak before, so consider this his world premier (he is a good reader).


Dear Friends and Family:

On November 4, I will be running the NYC Marathon for the 4th time. This journey will be different, as I am committing my run this year to benefit CO/LAB, the amazing theater group that Dusty ACTS — yes acts — with and I am proud to serve as a Board Member of. I have never run a marathon in support of a non-profit before — a lot more pressure — but CO/LAB has become too important to us not to take the opportunity and ask for your support as I undertake this oh so daunting journey.

CO/LAB (Creative Opportunities without Limits And Boundaries) provides individuals with developmental disabilities a creative and social outlet through theatre arts. Dusty has participated in their Musical Theatre Ensemble class, performed in his first show, With Words, and is learning about Physical Theater in CO/LAB’s newest class. For many years, Dusty has enjoyed Broadway as a member of the audience…thanks to CO/LAB he now gets to experience the joy of expression and creation and perform on the stage!. Please enjoy this short (2:20) film of Dusty’s CO/LAB journey:

At this year's autism friendly performance of The Lion King, something truly amazing happened during Simba’s second act solo, Endless Night. Dusty was singing along, and suddenly got an anguished look on his face and clenched his fists. I braced myself for a melt down. The song built and Dusty’s look became even more anguished and his knuckles turned white, they were squeezed so hard. And then….wait for it….the song ended, Dusty relaxed his hands, and he smiled. In that moment, Dusty had become Simba. Dusty was Acting. That’s the power of theater. That’s the power of CO/LAB.

CO/LAB has created a truly inclusive and judgement-free environment that encourages Dusty to discover and express his voice through acting.  Please consider supporting my marathon journey this year through my #Imwithcolab Crowdrise campaign:*

https://www.crowdrise.com/o/en/campaign/imwithcolab/katiesweeney  

CO/LAB’s core programming is offered at no cost to its Actors; thus any donation of any size is greatly needed and genuinely appreciated.  A lot of people giving a little adds up to a lot. 

There once was a day as many of you know when Dusty got thrown out of a theater — a Broadway theater in fact. Now, thanks to CO/LAB, he is theater! Moments of despair. Moments of glory. Much like the Drama masks. Much like a marathon.  Much like life.

Our love and gratitude,

Katie, Mike, Dylan and Dusty

*If you prefer, you can mail your gift to me, made out to CO/LAB Theater Group (see address below) and I will be honored to hand deliver it to Becky Leifman, our wonderful co-founder and Executive Director.

The Sweeney Family

1619 3rd Avenue, Apt. 21K

New York, NY 10128


co:lab theater lincoln.jpg

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

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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

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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 www.thecenterfordiscovery.org or contact Vice President of Development Bill Evans at bevans@tcfd.org.

 

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Where does "Low-Verbal Autism" fit in the SPARK Snapshot?

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Where does "Low-Verbal Autism" fit in the SPARK Snapshot?

SPARK for Autism just published:

SPARK Snapshot summarizes the information that independent adults with autism shared with SPARK when they enrolled online between December 2015 and April 2018.
— SPARK for Autism


I have heard a few people classify Dustin Sweeney and similar profile kids and adults as “Low-Verbal Autistics”. For now, I think that describes Dustin’s challenges pretty well. When I see this data from SPARK, it makes me realize that this “integration” question is going to be very complicated because of the wide range of people in the “Autism Spectrum”.

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Work vs Benefits: Social Security Benefits and Employment for the Developmentally Disabled

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Work vs Benefits: Social Security Benefits and Employment for the Developmentally Disabled

In June of 2018, I created the Metro NYC Autism Economy page as we are starting to see jobs for the Developmentally Disabled community. This also raised a number of questions as the wages could be a detriment for benefit programs that are in place today for my son and many in our population. 

Autism Speaks came out with this video and frequently asked questions below to ease concerns about disability benefits. It's not perfect, but it is a really nice step in the right direction. 


What are some of my options to keep social security and work? 

Here are some examples of work incentives that you can consider:

Ticket to Work (TTW)

The TTW Program is an innovative program that can connect you with free employment services to help you decide if working is right for you, prepare for work, find a job or maintain success while you are working. It is a free and voluntary service. If you choose to participate, you will receive services such as career counseling, vocational rehabilitation, and job placement and training from authorized Ticket to Work service providers. Learn more here.

Impairment-Related Work Expenses (IRWE)

Social Security can deduct the cost of certain items, such as transportation services,  medical devices, etc., that are directly related to your disability and you must have to work. This means that when Social Security measures your income compared to the benefit limit, they will subtract the cost of these expenses. Learn more here

Plan to Achieve Self-Support (PASS)

A PASS allows you to set-aside expenses related to achieving a work goal. These expenses may include start-up funding for a business, a vocational assessment, training, etc. Social Security does not count the income you set aside when they calculate your SSI payment amount or eligibility for SSI. For example, a PASS Must be specific to achieve a detailed work.  Learn more here.

Expedited Reinstatement (EXR)

If you find employment that causes you to lose your benefits and you lose your job for some reason, you may be able to have your benefits started again right away through a request for Expedited Reinstatement. To qualify, you must apply within five years of losing your Social Security Disability benefits due to gainful employment. Learn more here.

What is the Medicaid Buy-In program?

This program allows workers with disabilities who have earnings that exceed traditional Medicaid rules to “buy in” to Medicaid coverage. Ideally, it means workers with disabilities do not need to choose between healthcare and work. Learn more here

Can someone help me understand my options?

Yes! There are a couple of free resources available to help you through this process.

Work Incentives Planning and Assistance (WIPA) Projects, where you can meet with Community Work Incentive Coordinators (CWICs). CWICs are benefits counselors who are trained and certified by Social Security to help you make informed choices about work.

CWICs can help make sure you have the right information for success. They will help you:

  • understand the impact of earnings on all of the benefits you receive
  • know which Social Security Work Incentives you’re entitled to
  • make a successful transition to financial independence

Call 1-866-968-7842 (Voice) or 1-866-833-2967 (TTY).  Learn more here.

Protection and Advocacy for Beneficiaries of Social Security (PABSS) organizations, offer free legal help and advocacy assistance during your search for employment. They can advise you on challenges you might face such as:

  • requesting job accommodations
  • protecting your rights to housing and transportation to and from work
  • accessing services from community organizations
  • understanding conditions of your employment

Call 1-866-968-7842 (Voice) or 1-866-833-2967 (TTY).  Learn more here.

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2018 NYC Surfers Healing Barbecue and Fundraiser - Monday September 9, 2018

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2018 NYC Surfers Healing Barbecue and Fundraiser - Monday September 9, 2018

This is the annual New York City fundraiser for Surfers Healing. Our friend Izzy Paskowitz is a legendary Professional Surfer who now uses his surfing talents to teach thousands of Autistic children per year to surf in Australia, Hawaii, California, Puerto Rico and the East Coast of the United States. We barbeque steaks, hamburgers, and hot dogs at the Paul O. Colliton Studio, and we drink healthy amounts of water, beer, and wine. Our Surf DJ is Stephen Popkin for the evening. With this view of Chelsea, and the entertainment from the Surfers, our $75 suggested donation is THE BEST FUNDRAISER IN MANHATTAN! Please join us, it really is a great cause, group, location, and event.


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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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