While working on the ArchCare project on Staten Island, it has come to my attention that Staten Island is a leader in the Self-Direction movement. Here is a great update for Staten Islanders from the JCC of Staten Island. It is also a wake-up call for the other boroughs and areas of NYC. The “Faith Based Communities” are going to be very important for our community:
Viewing entries in
SPARK for Autism just published:
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”.
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.
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.
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':
- It is better for a majority of the Developmentally Disabled population (recognizing, though, not all will be able to integrate);
- 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.
Programs at Otto Specht include:
- Early Childhood
- Grades 1-12
- Vocational Arts Program (grades 9-12)
- 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.
There are a many programs at the Threefold Educational Foundation, listed here.
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:
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:
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
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.
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.
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.
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.
Appendix 2 - The needs, hopes and specific areas of interest expressed by the parents include:
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.
- 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.
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: