Hear about the successes and challenges of our young coalition.
Talk about what should happen next.

Evening Edition Zoom Meeting @ 7 PM

Time: Jan 23, 2025 7 PM Eastern Time

Please pre-register, so we know how many to expect: click here

There will be two sessions on Thursday January 23rd.
This one at 7pm, and an earlier one at Noon. All are welcome!

Good News: A family wins in court
In December a judge issued a favorable ruling in an Article 78 case that a family brought after their Community Class was denied by OPWDD. The judge firmly rejected OPWDD's arguments that there was no denial of services and that the decision made by the Fiscal Intermediary had nothing to do with OPWDD. Key excerpts: 

• "The petitioner's application for reimbursement was being treated in a different manner [than other Self Direction participants who did receive Medicaid reimbursement for the same classes]. That would seem to be the very definition of 'arbitrary and capricious' conduct."

• "It appears that OPWDD deprived the petitioners of their right to notice, and a fair hearing as required when an agency discontinues, suspends, or reduces a Medicaid recipient's benefits or services." 

Good News: OPWDD concedes in court that people have the right to a Fair Hearing
In another Article 78 case about Community Classes, the lawyer for OPWDD argued in a procedural hearing that there is a right to a Fair Hearing, and that the judges should not hear the Article 78 case because there has not yet been a second Fair Hearing.

There is a great deal of hypocrisy here, since at the first Fair Hearing for this case, OPWDD had argued that there is no right to a Fair Hearing. We are waiting to hear the result of the Article 78 procedural hearing, and of the Article 78 case itself. 

• OPWDD's lawyer said, at the procedural hearing, which was public and recorded:
  "OTDA... runs the Fair Hearing process. They determined that there was jurisdiction to resolve this reimbursement in this case... OPWDD and DoH are committed to following those jurisdictional decisions [that there is a right to a Fair Hearing]." 

The OPWDD lawyer was careful to repeatedly use the phrase "in this case," only conceding the right to a Fair Hearing in this specific instance. Therefore, in all Community Class cases going forward, when OPWDD attempts to argue that there is no right to a Fair Hearing, you will want to challenge them to explain to the Administrative Law Judge the (nonexistent) difference between your case and "this case." 

Hear about the successes and challenges of our young coalition.
Talk about what should happen next.

Mid-day Zoom Meeting

Time: Jan 23, 2025 @ Noon

Please pre-register, so we know how many to expect: click here

There will be two sessions on Thursday January 23rd.
This one at 12pm and another at 7pm. All are welcome!

Good News: A family wins in court
In December a judge issued a favorable ruling in an Article 78 case that a family brought after their Community Class was denied by OPWDD. The judge firmly rejected OPWDD's arguments that there was no denial of services and that the decision made by the Fiscal Intermediary had nothing to do with OPWDD. Key excerpts: 

• "The petitioner's application for reimbursement was being treated in a different manner [than other Self Direction participants who did receive Medicaid reimbursement for the same classes]. That would seem to be the very definition of 'arbitrary and capricious' conduct."

• "It appears that OPWDD deprived the petitioners of their right to notice, and a fair hearing as required when an agency discontinues, suspends, or reduces a Medicaid recipient's benefits or services." 

Good News: OPWDD concedes in court that people have the right to a Fair Hearing
In another Article 78 case about Community Classes, the lawyer for OPWDD argued in a procedural hearing that there is a right to a Fair Hearing, and that the judges should not hear the Article 78 case because there has not yet been a second Fair Hearing.

There is a great deal of hypocrisy here, since at the first Fair Hearing for this case, OPWDD had argued that there is no right to a Fair Hearing. We are waiting to hear the result of the Article 78 procedural hearing, and of the Article 78 case itself. 

• OPWDD's lawyer said, at the procedural hearing, which was public and recorded:
  "OTDA... runs the Fair Hearing process. They determined that there was jurisdiction to resolve this reimbursement in this case... OPWDD and DoH are committed to following those jurisdictional decisions [that there is a right to a Fair Hearing]." 

The OPWDD lawyer was careful to repeatedly use the phrase "in this case," only conceding the right to a Fair Hearing in this specific instance. Therefore, in all Community Class cases going forward, when OPWDD attempts to argue that there is no right to a Fair Hearing, you will want to challenge them to explain to the Administrative Law Judge the (nonexistent) difference between your case and "this case." 

A global network open to anyone who has an interest in delivering, commissioning, promoting or drawing on self-directed support.

Registration link: https://actionnetwork.org/events/self-directed-support-global-network-meet-up-3/

To learn more about the global network: https://selfdirectedsupport.org/people

They extended OPWDD's Self-Direction survey by five days. And January 10th is now the last day!

One fear that has come up in discussions among advocates:

Complaints about Fiscal Intermediaries could be used as an excuse by NYS to attack. So, if you have an FI that does good things for you please make sure to put comments about that in the open text reply at the end of the survey.

As you decide how to fill out your survey, two helpful resources: 

1. The Global Standards for Self Direction, a one-page list created by an ad hoc international group of parents, self-advocates, and professionals. It is a great list, and you might want to copy & paste the entire list into one of the open-ended text boxes of the OPWDD survey.

2. The IRIS report from Wisconsin, quotes from which we have slightly adjusted here to apply to Self Direction in New York State. 

• Self Direction tasks are too burdensome and the constantly increasing administrative responsibilities placed on SD participants overtakes their lives and limits their ability to live full community lives. There is too much Red Tape.

• The transaction costs of IDGS are extremely high; participants and families are forced to complete tasks listed as expectations of Support Brokers and Fiscal Intermediaries, in addition to the time spent providing other direct supports due to workforce crisis and system capacity limitations. 

•  OPWDD seems overly focused on the possibility of fraud within SD, especially on the part of families. There is no evidence of fraud being greater in the SD program than any other Medicaid program.

Thank you for sharing your voice and advocating on behalf of Self Direction!

In case you missed it— on December 23rd, just before Christmas,
OPWDD announced two Townhalls on Self-Direction.

You can attend in person in NYC or Syracuse, or on-line from anywhere.

Pre-registration required. For the evening session: https://guidehouse.zoom.us/meeting/register/tZIocuirqDwsHNfHlVhe_i8il2JsTcxb1sgB

In case you missed it— on December 23rd, just before Christmas,
OPWDD announced two Townhalls on Self-Direction.

You can attend in person in NYC or Syracuse, or on-line from anywhere.

Pre-registration required. For the morning session: https://guidehouse.zoom.us/meeting/register/tZclfu6rrDwjH9Z6JRI9PADcNYx2ci0mzGOv

Today is last day to fill out OPWDD's Self-Direction survey !

As you decide how to fill out your survey, two helpful resources: 

1. The Global Standards for Self Direction, a one-page list created by an ad hoc international group of parents, self-advocates, and professionals. It is a great list, and you might want to copy & paste the entire list into one of the open-ended text boxes of the OPWDD survey.

2. The IRIS report from Wisconsin, quotes from which we have slightly adjusted here to apply to Self Direction in New York State. 

• Self Direction tasks are too burdensome and the constantly increasing administrative responsibilities placed on SD participants overtakes their lives and limits their ability to live full community lives. There is too much Red Tape.

• The transaction costs of IDGS are extremely high; participants and families are forced to complete tasks listed as expectations of Support Brokers and Fiscal Intermediaries, in addition to the time spent providing other direct supports due to workforce crisis and system capacity limitations. 

•  OPWDD seems overly focused on the possibility of fraud within SD, especially on the part of families. There is no evidence of fraud being greater in the SD program than any other Medicaid program.

We would love to hear your perspective and see your answers—please send them to us at info@coalition4sdf.org. And, let us know if you are comfortable with your responses being shared with the Advocacy community!

Thank you for sharing your voice and advocating on behalf of Self Direction!

A conversation with former US Representative Marc Molinaro on Friday January 3rd at 10am EST. 

Rep. Molinaro has a child on the autism spectrum, and he created the ThinkDIFFERENTLY initiative to

"change the way individuals, businesses, organizations, and communities
relate to our neighbors with special needs." 

Register here for the event!

SOYAN is hosting a community workshop on January 2nd at 7:30pm to discuss OPWDD's Self-Direction survey (due January 6th). 
Participants will discuss the survey and gain insights about how to best fill it out and advocate for Self-Direction.

You must register in advance for the workshop. The invitation link will be circulated 15 minutes before the start, at 7:15. The workshop will not be recorded.

Last session of 2024. Good time to look back on our first year of activity, and look ahead to 2025.

Meeting of the chairs of the various working groups— Housing, Employment, Education, etc.
This meeting occurs every two weeks.

Most Integrated Setting Coordinating Council, run by Kim Hill, the Chief Disability Officer.
An opportunity to hear what the State is doing to ensure access to services, for all special populations, including Developmental Disabilities.
And, an opportunity to weigh in during public comment about what obstacles we are encountering.
Current MISCC policy is to let anyone speak during public comments.

Pre-registration is recommended, use link below. And, during the time a meeting is in progress, it is possible to register and join.

https://www.ny.gov/office-chief-disability-officer/most-integrated-setting-coordinating-council-miscc

Meeting of the chairs of the various working groups— Housing, Employment, Education, etc.
This meeting currently occurs every two weeks. Participation limited to chair-persons.
Use “Your SD Priorities” to let us know if you wish to participate in one of the working groups.

The Marlene Meyerson JCC of Manhattan at the Center for Diverse Abilities is pleased to present our School Fair! Representatives from preschools through high schools serving the New York City special needs community will be on site to provide information and answers to your questions about the application process, class profiles, tuition costs, and more. School materials will be available.

Wed. Nov 13, 5:30-7:30 pm. Free for families and registration is required.

The fair will be held at the Marlene Meyerson JCC of Manhattan located at 334 Asmterdam Avenue New York, NY 10023.

The Special Education School Fair is generously sponsored by the Riverview School.

If you are interested in learning more about sponsorship opportunities or have general questions about the fair, contact Julie Singer at jsinger@mmjccm.org.

102 training. A post-election follow-up for everyone who attended the 101 meeting— or viewed the recording. Together we will assess our progress and plan out our next activities.
Friday November 8th at Noon.

Pre-registration required: https://us02web.zoom.us/meeting/register/tZwpd-qupjktGNfrkPnoZ5soKdCdMGUSQAds

Webinar 2: Specialized I/DD Plans - Provider Led (SIP-PL)
Presenter: Brett Friedman, former NYS Medicaid Director and current Partner at Ropes & Gray
Date/Time: Wednesday, November 6th, from 1-2pm
Click Here to Register

Free event but you must register via Eventbrite (link above) to receive an invite.

Previous recordings of educational sessions on different models that seek to more holistically support people with I/DD can be found here.

(Please note: CWPS might be a sincere attempt to restructure, or it might be an attempt to disguise Managed Care. Either way, it is worth staying aware of what is going on with this emerging astroturfing group.)

Meeting of the chairs of the various working groups— Housing, Employment, Education, etc.
This meeting currently occurs every two weeks. Participation limited to chair-persons.
Use “Your SD Priorities” to let us know if you wish to participate in one of the working groups.

The Coalition for Whole Person Supports is offering two additional webinars on models for improving whole person supports. Please find details and link to register below.

Free event but you must register via Eventbrite to receive an invite.

Webinar 1: Programs for All-inclusive Care for the Elderly (PACE) and the I/DD Population
Presenter: Scott LaRue, CEO of Archcare
Date/Time: Wednesday, October 23rd, from 1-2pm ET
Click Here to Register

(Please note: CWPS might be a sincere attempt to restructure, or it might be an attempt to disguise Managed Care. Either way, it is worth staying aware of what is going on with this emerging astroturfing group.)

Meeting of the chairs of the various working groups— Housing, Employment, Education, etc.
This meeting currently occurs every two weeks. Participation limited to chair-persons.
Use “Your SD Priorities” to let us know if you wish to participate in one of the working groups.

Legislation Advocacy 401 training: For both beginners and long-time advocates, a more advanced course that focuses on: timelines, how we can help shape policies, and maximizing our impact to drive real legislative change for the DD community.
Wednesday October 16th at 7 PM.

Pre-register at: https://us02web.zoom.us/meeting/register/tZItceGgrTMsH9JKSa2F_smU0VHljL7rMYCw

Meeting of the chairs of the various working groups— Housing, Employment, Education, etc.
This meeting currently occurs every two weeks. Participation limited to chair-persons.
Use “Your SD Priorities” to let us know if you wish to participate in one of the working groups.

Legislative Advocacy 101 session

Friday September 27th, from 12 PM to 1 PM

Learn how to talk to your Local Legislators to convey the challenges that families with disabilities face and how they can help.

Registration to the Zoom meeting required,

Please use this link to register:

https://us02web.zoom.us/meeting/register/tZUqd-2qpjMqHdAlRAklCt3OulKOoJqONkdG

https://www.nypl.org/events/programs/2024/09/21/disability-activist-panel-discussion

Meeting of the chairs of the various working groups— Housing, Employment, Education, etc.
This meeting currently occurs every two weeks. Participation limited to chair-persons.
Use “Your SD Priorities” to let us know if you wish to participate in one of the working groups.

Update on September 16. Message from NYC FAIR:
We regret to inform you that the NYC FAIR TOWN HALL ABOUT THE CAS scheduled is cancelled.

What: NYC FAIR TownHall on the Coordinated Assessment System
When: Wednesday, Sept 18 from 7pm to 8:30pm

How: Register with this link: forms.gle/Fzmc5xoqmbRvLdgG9
Who: Parent moderaters, Albert Pruett of OPWDD.

Why: The Federal government requires that NYS assess everyone getting services from OPWDD. How will we know that they are doing a good job of assessing? What are the options if they don't?
Mr. Pruett is the Director, Bureau of Assessment Oversight and Coordination for the Office for People With Developmental Disabilities