Viewing entries tagged
self direction

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



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.


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


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

Self-Direction in New York - A Practical Guide for Families by the New York Self-Determination Coalition


Self-Direction in New York - A Practical Guide for Families by the New York Self-Determination Coalition

Legacy Systems vs Self-Direction for the Developmentally Disabled

Legacy Systems vs Self-Direction for the Developmentally Disabled

Jackie Ceonzo of SNACK NYC recently raved about the work that many families on Long Island are doing for "Self-Direction in New York" in the OPWDD system. Jackie introduced me to Maggie Hoffman of the New York Self-Determination Coalition (NYSELFD), and they published their guide last year as a GREAT roadmap for families new to the Self-Direction world in New York:

"The Coalition is an ad hoc group of parents and professionals dedicated to promoting self-determination as an option for persons with developmental disabilities who require support through the New York State Office for People with Developmental Disabilities. The Coalition works to promote positive system change to bring about public policy reform, financial integrity, and ultimately, increased satisfaction for people with intellectual/developmental disabilities.  NYSELFD members also mentor parents who have questions about self-directed services."

Advocacy Committee

  • Maggie Hoffman

  • Susan Platkin

  • Shelley Klein

  • Kathleen Marafino

This Guide is for families who are interested in using Self-Directed Services for their child with developmental disabilities. If you need an introduction to Self-Direction, see “Frequently Asked Questions about Self-Directed Services,” and “Steps to Transition to a Self-Determined Life”.  
— Maggie Hoffman of New York Self-Determination Coalition (NYSELFD).
Maggie Hoffman of NYSELFD

Maggie Hoffman of NYSELFD

Susan Platkin, M.D, is a founding member of New York Self-Determination Coalition, and a member of its Advocacy Committee. Her daughter Ruth, 31, has I/DD as well as bipolar disorder. Over the past 25 years Susan has advocated on both state and local levels for the inclusion of children and adults with disabilities in their schools and communities. Most recently she has served on OPWDD work groups and committees addressing issues in self-direction, health, and managed care

In combination with Jo Anne Schneider's "Report on NY Housing - Intellectual and Developmental Disabilities", and OPWDD's "Self-Direction Guidance for Providers", we are now seeing roadmaps in New York State Self-Direction for:

  • Housing,

  • Community, and

  • Programming.



Deadline November 13, 2017: Affordable Housing Units in the Hudson Valley

Via John Maltby and The Housing Navigator Network:

Applications for one bedroom apartments in Pleasantville, Rye Brook and Lewisboro are due November 13, 2017.  These one bedroom apartments provide a unique affordable housing opportunity at rents ranging from $790, $800 and $1140.  The apartments are ready for occupancy.  See the application at  Please contact Rose Noonan if you have questions. 


Rose Noonan, Executive Director

Housing Action Council, Inc.

55 South Broadway, 2nd Fl

Tarrytown, NY 10591

Tel:  914-332-4144

Fax: 914-332-4147




Copied from

OPWDD will be holding a Public hearing videoconference at sites around the state to gather input for the Statewide Comprehensive Plan 2018-2022, on September 25th, from 3-7pm. Anyone can attend, but you have to register If you want to speak. Registration closes September 15, but there are only a limited number of spots. Go to

But EVERYONE can submit written comments by Sept 25! Keep in mind:

Your comments can be one or two paragraphs only, a few sentences, or just a list of bullet points. A brief story about your family member is helpful, but not necessary.

OPWDD reads all submissions, and tracks the number of comments/recommendations on specific issues. This is your chance to advocate for the issues that are important for people who self-direct. 

Quick Read

By 2024 almost all OPWDD services will be delivered through managed care. A Care Manager will expand the role of the MSC, and “coordinate” each enrollee’s Medicaid medical, behavioral*, and other “wellness” services, as well as long term care (this includes self-directed services). The State’s goal is to improve the quality of care, improve health, and lower costs. However, in delivering Self-Directed Services through managed care, there is clear potential for limiting options for people who self-direct. 

*The term: “Behavioral health” refers to what used to be called “mental health”

OPWDD has committed to continuing self-directed services. However, as of yet they have not clearly spelled out how self-direction with employer and budget authority will work under a managed care system operating under the direct authority of the New York State Department of Health. Self-direction’s goal is to maximize individualization and choice: Managed Care Organizations traditionally succeed by limiting options.

For those who use self-directed services, what will managed care mean?

  • Will there still be room for creativity and choice?
  • Will managed care organizations steer people into more “cost effective” group settings?
  • Will budgets be cut, limiting peoples’ options to live outside the family home?
  • Will we still be allowed to pay staff wages comparable to OPWDD agency rates?

What can you do today?

  • Are you ready to write a brief letter to strengthen self-directed services now? See Issues to consider for comment and Letter Writing just below. Send your comments to:

  • Do you want to see OPWDD’s official request for comments?

Go to

Issues to consider for comment - Self-direction must continue to be a viable option under managed care.

Here’s what’s needed: 

  1. Assessment that is objective and able to document all support needs
  2. Adequate funds to support people 24/7, with staff and use of technology
  3. Financial support to pay for non-certified housing, and knowledgeable people to assist in the process
  4. Sustainability:  supports for people who don’t have a parent or other caregiver to assist them to self-direct
  5. Continuation and strengthening of self-directed supported employment

Assessment: Coordinated Assessment System

Currently, New York State uses a test called the Uniform Assessment System to support care planning and service delivery for all Medicaid agencies except OPWDD. Recently, OPWDD has adopted the Coordinated Assessment System (CAS) which adds 16 domains to the UAS to help identify a person with I/DD’s behavioral and medical needs. The goal is to eliminate silos between different departments and to coordinate services. However, its effectiveness is still being evaluated.

People who self-direct are the only group whose supports and services must fall within a dictated budget.  Because the budget is determined by the assessment, accurate testing is critical. We have recently become aware of problems with administration of both the currently used DDP2 and the CAS, which will eventually replace it.

Two families recently reported that a DDP2 was administered to their child by someone who didn’t know them, without either the parent, broker, or their MSC. An unknown MSC was present. The families found out about this when they got a notice their budget was being decreased. Clearly, this is not how the system is supposed to work.

We have had mixed reports from parent and brokers about the CAS. Some assessors are doing the work thoughtfully, but others are asking multiple direct questions, rather than having a conversation that drives a nuanced understanding of the individual.  This especially is an issue for people with chronic intermittent problems, which may easily may be swept under the rug when the assessor is not thorough. Because of the way the assessment tool is constructed, a rigid, superficial approach causes fewer domains to be explored, and support needs can go undocumented.


OPWDD should provide evidence that limiting some questions about health and safety issues to the last 3 days provides valid, predictive information in this population.

Given the importance of a numerical score for people who self-direct, develop a grievance process to address significant disparities between the assessment score and the on the ground assessment from those who interact daily with the person.

As we have previously suggested: Develop a post-assessment feedback form for family/circle of support that will result in actionable data.

Supported Employment

After CSS ended in Oct 2014, job coaching could still be self-directed, but most people could no longer hire a job developer to help them find the right job. OPWDD has suggested, on the basis of a recent review, that people who were self-directing were less likely to be employed, and that SEMP should no longer be offered as a SD service. 

After hearing a brief summary of the research, we concluded that the data used was probably flawed, and therefore should not be used as the basis for change in policy.

Currently, in order to access job development services through OPWDD, a person who self-directs is required to use an agency program. This is not an efficient way to deliver services to someone who self-directs:

  • It can cause a major strain on the budget, and significantly decrease the total amount of an individual’s support time. 
  • Much of the “Discovery” part of Pathway has already been done by the circle of support.
  • A significant number of people who use Self-Directed Services work at integrated, minimum wage jobs, but for only 2-10 hours a week. The “job coach” functions to support the person’s interaction with others, behavioral challenges, safety, etc. Innovations job coach training adds little in this setting. If SD SEMP is eliminated, people will continue going to work with their community hab worker, but the hours will not be reflected as integrated employment, a valued outcome.


Instead of doing away with Self-Directed SEMP, OPWDD should strengthen the program:

A competitive budget line for job developers

  • A person-centered approach to training requirements for job coaches (e.g., no requirement for expensive and time-consuming Innovations training, if the job coach functions primarily in the role of a community habilitation worker)
  • If a job coach needs specific task training to support an individual at their workplace, the job coach be funded to be trained in a discrete task or group of tasks.
  • To gather data about effectiveness, this could be run as a pilot program. 

Enhanced Broker 

Some people who self-direct are able to take an active role in the long-term and day to day management of their plan, but most cannot. When self-direction was first piloted in the early 90’s, it was believed that real community inclusion would result in people developing “natural supports” that would, over time, take the place of some paid direct support and administrative roles. Unfortunately, this goal remains aspirational for most of us. For self-direction to survive as an option for everyone, a structure must be set up to act in the “parent” role when a parent is unavailable.

Broadly, the parent/guardian fulfills three roles in supporting people with I/DD to self-direct.

  1. The executive part: hiring and training direct support staff and consultants, setting wages, addressing problems that arise with staff, deciding on the need for medical attention, budget decisions, and more.
  2. The hands-on part: arranging for (or filling in as) coverage for people who need 24-7 in both planned (staff vacations) and unplanned (staff illness, car problems, storms) circumstances
  3. Paperwork: timesheets, monthly reports, vendor paperwork, etc.

(Currently, there’s a budget line for “self-directed staff support, but the pay rate is low for the level of responsibility, e.g., ensuring Medicaid compliance).

Currently on Long Island we know of two self-directing individuals with significant support needs who are without family or guardian support. In both cases, brokers have assumed the “parent” role successfully. However, this is the exception, not the rule.


Establish an “enhanced broker” who will close the gap in the service delivery system and enable people to age in place in their communities using self-directed services. This will allow for sustainability. 

As the 1115 is a demonstration waiver, this would be worthwhile small pilot program. It could be used both for people who do not have an active parent or guardian, and for those whose parents are unable to fulfill the role.

Access to self-direction for people who need 24/7 support

Currently, when people using Self-Directed Services live out of their family home and require 24/7 support, a family member is required to provide some number of hours of direct care on a regular basis. (We’re talking about “You will be covering every Wednesday from 9-3,” not, “why don’t you come over for dinner tonight, your cousin is visiting”).

Some people with I/DD don’t have family caregivers, and all caregivers will age and die. Inevitably, emergencies arise for staff, and as people age, their support needs often become more intense or complex. 

The cost of people living in a group setting and attending a traditional program far exceeds the cost of supporting a person with I/DD in a community setting in almost all cases. Further, it is well established that many people currently live in more restrictive settings than their needs dictate.

Fairness (and Olmstead) dictate that there should at least be parity: if it costs X dollars for a person to live in a group home, the same amount should be available to live in non-certified housing with all necessary supports and services. 


Provide adequate funding and infrastructure to support people who self-direct and require 24/7 support


When people move out of their family home or a more restrictive setting they will need assistance to find housing that is right for them, and funding to afford it.

Fairness and the Olmstead decision dictate that if the state will support someone to live in a group home for X dollars, the same amount should be available for someone to live in anon-certified home in the community. 

This still leaves the issue for the individual of how to go from wanting to move, either from the family home or certified setting into a home of their choice, with or without roommates.

Seeing this need, OPWDD awarded a grant to NYSACRA to design and implement a “Housing Navigator” curriculum, and a number of people have already completed the program. The goal is for graduates to be “qualified to create housing opportunities for individuals and to develop agency capacity for more housing options.”  (From NYSACRA Center for Innovations and Development Training Academy).

This pilot was successful:  we believe there should be enough housing navigators to serve anyone who needs one across the state. 


Everyone who self-directs and chooses to move into a home in their community should have access to housing navigation which should be a billable Medicaid service usable by people who self-direct.

Suggested letter writing guidelines

  • State you’re a parent or guardian 
  • Describe the issue, and how it affects your child
  • Offer a potential solution –Your own idea or one we’ve described above

Most important: Don’t let the perfect get in the way of clicking send! They count the responses, and it’s more important to get your opinion out than to make it perfect.

Please bcc us a copy-it will help us to know if the information we send is useful to you.

Questions? Contact us at




September 25, 2017 Meeting: Register for Self-Direction in New York - OPWDD in Manhattan with Kate Bishop

September 25, 2017 Meeting: Register for Self-Direction in New York - OPWDD in Manhattan with Kate Bishop

We use "Self-Direction" for our son's after-school activities today, and when his school ends at 21+, we plan to move 100% to Self-Direction. See the right hand side of the chart below for a simple vision of "Self-Direction":




The Opportunity You’ve Been Asking For!  
Self-Direction: Questions and Answers with Kate Bishop, Director of Program Development, OPWDD. 
Monday, September 25, 2017
5:30-7:30 PM
Services for the Underserved
305 Seventh Avenue (at 27th Street), 11th Floor
New York, N.Y. 10001*

Self-Direction: So Promising, So Challenging

  • Self-direction enables you to select the services you want and to hire and supervise your own staff.  You can also manage your own budget.
  • Many families have chosen self-direction BUT have faced obstacles of many types. 
  • Kate Bishop is OPWDD’s self-direction guru.  She has offered to try to answer your questions and provide solutions.



Families from all boroughs welcome.  

Spanish or Chinese interpretation provided if requested by September 11.  Contact Margaret at 212-799-2042 or to request interpretation.

*Subway: 1 to 28th Street.  2, 3, A, C, E, N, R, Q, B, D, F to 34th Street.    Bus: Downtown: 7, 20 to 28th Street/7th Avenue; 4 to 32ND Street/7th Avenue.  Uptown: 20 to 28th Street/8th Avenue; 5, 7 to 28th Street/6th Avenue.  Crosstown: 23 to 23rd Street/7th Avenue; 34, 34A to 34th Street/7th Avenue.


Light Supper Will Be Provided

For further information, contact Margaret Puddington, chair, 212-799-2042,