C4SD’s Employment Committee has joined forces with Beth Rosenberg's ASD Workforce Coalition. Beth is the ED of Tech Kids Unlimited. This is a well-established advocacy organization. Folks interested in joining should reach out to Beth at asdworkforcecoalition@techkidsunlimited.org

About ELIJA Foundation:

ELIJA (Empowering Long Island's Journey through Autism) is excited to be hosting our 18th Annual Sy Schwartz Golf Outing on Monday, June 2nd, at the amazing Brookville Country Club, Brookville, Long Island, honoring Craig Carton, renowned sports radio and television personality, 2024 New York State Broadcasting Hall of fame inductee, current host of Breakfast Ball on FS1, and Hello, My Name is Craig on WFAN. 

Proceeds from this annual event go directly to improve the lives of the 1 in 36 children being diagnosed with an Autism Spectrum Disorder (ASD), which today is more common than pediatric cancer, diabetes, and AIDS combined.

While there is no prevention or cure for Autism, research indicates that the appropriate support can result in significant improvements and outcomes for those affected. We at ELIJA work tirelessly to improve outcomes by offering our learners a personalized and quality education, focused on developing communication, social and cognitive skills.

The ELIJA Foundation, a not-for-profit, 501c (3) organization, has been serving parents, educators, professionals, and caregivers of children with an ASD since 2002. The ELIJA Foundation provides the community with educational opportunities that focus on improving the quality of programs and services available to children with Autism. In 2006, The ELIJA School opened its doors to extend the mission of the Foundation and start helping children with Autism. In 2016 we expanded programming to support our young learners as they transition into adulthood.

ELIJA's focus is to empower individuals and families living with an ASD throughout their lives. We believe in hope and hard work; that all children (or adults) with an ASD deserve a chance, and their families deserve our commitment, expertise and support!

C4SD’s Employment Committee has joined forces with Beth Rosenberg's ASD Workforce Coalition. Beth is the ED of Tech Kids Unlimited. This is a well-established advocacy organization. Folks interested in joining should reach out to Beth at asdworkforcecoalition@techkidsunlimited.org

For people with disabilities, these cuts put home and community-based services (HCBS) at risk of being significantly reduced or eliminated. Senator Schumer will provide the latest updates from Washington. Advocates will share first-hand experiences of getting out of institutions and how Medicaid cuts put them and others at risk. Medicaid policy expert Michael Kinnucan of the Fiscal Policy Institute will explain the financial and human impacts of cuts on New York. There will be time to answer a few questions and share ways you can take action.

Click here to register for the town hall!

Advanced/Creative Self-Direction budgeting

Come hear Ken Siri, a very experienced SD broker and parent talk to us about creative budgeting ideas he has seen, especially as people try to set up non-certified housing and living situations.  Please note, this is not an introductory session.

Link to sign up: https://docs.google.com/forms/d/e/1FAIpQLSeCrBdos5p7T68aWvMBDOve_WmubcfL3kly87CEdp8FnlB8BQ/viewform

We are extremely excited to announce that we have secured a town hall with OMIG, where they will be available to answer questions from 12pm to 1:30pm on March 21st. 

Our community for the last 2 years has been told by OPWDD that community class denials have increased because they will not stand up to scrutiny from OMIG and money will be clawed back from FIs. Well, we have gone to the source and asked. Now you have the opportunity to directly hear the answers from OMIG. 

All are welcome to come and to submit questions—Parents, Self-Advocates, Brokers, Fiscal Intermediaries, Care Managers, Community Class Providers, etc. We are so excited for this opportunity for our community.

A link to the meeting will be shared with all who registered.

Subtitles in other languages will be available. Subtítulos traducidos. 翻译字幕 

Use this form to register by the end of the day today!
(Too late to submit questions, but you can still register)

Use this form to register and submit your questions by the end of the day today!

Come Hear from Housing Differences/John Maltby!!

Housing Differences (https://www.housingdifferences.com/). Come here from the amazing folks at Housing Differences, including John Maltby, talk about their experiences and lessons learned in the adventures of creating and implementing non-certified housing groups. Funded thanks to Future Centered Care.

NOTE: if you are planning to come, please have reviewed the Housing Resource Guide first.

Please use this link to sign up!

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