Category: Uncategorized
Share Your Member Experience with OPWDD

OPWDD Townhall Meeting
on Future Planning
Your Opportunity to Be Heard
The Office for People with Developmental Disabilities (OPWDD) is hosting discussions designed to hear from people with IDD and their families to inform future planning. LIFEPlan CCO encourages you to participate in these upcoming discussions. It is important for your voices to be heard. We want our Members with IDD to get access to quality healthcare and disability support services when they
need them.
We strongly encourage you to join one of the meetings below to tell OPWDD what is and is not working in the current system.
Examples of topics you might share
- Do you struggle to find doctors or providers who will accept Medicaid?
- Primary care providers
- Specialists – neurology, cardiology, GI, etc.
- Behavioral health, Autism services, e.g., behavior analysts
- Dentists
- Do you have difficulty finding medical providers who understand the unique needs of people with autism, cerebral palsy, Down syndrome, and other intellectual and developmental disabilities?
- What disability supports and services have been difficult to access?
- Respite and family reimbursement
- Residential options to live in the community – planning for long-term needs
- Supports living at home
- Community services
- Employment for people with IDD
- Are there barriers to getting services and supports that need to be fixed?
- Delays in eligibility determinations
- Delays in approval for services
- Long waitlists to receive services
- Qualified staff not available
- If you use self-direction, does it meet your needs? How can it work better?
- What services and supports do you expect to need in the future that you worry won’t be there when you need them?
- People with aging caregivers
- People who age out of the school system (age 22+)
- Are there supports and services that you/your family member need that are not available today?
Please be sure to share what is working for you, that you would like to stay the same, and what can be improved.
Be part of the change and sign up for one of the sessions below!
Direct-support work deserves higher pay
Albany Times Union, Thursday September 28, 2023
We want to thank the Times Union editorial board for sounding the alarm in the editorial “New York’s care crisis,” Sept. 10. The conclusion that the need is now and increasingly urgent is spot-on, but the editorial did not include the crisis in the developmental disabilities sector.
Save Our Services is a statewide group of family members and providers who advocate for increased funding to pay a living wage to direct-service professionals who support people with intellectual and developmental disabilities. Unfortunately, our pleas have, with a few limited exceptions, fallen on deaf ears.
Clarence Sundram, a nationally renowned expert on services for individuals with intellectual and developmental disabilities, described direct service professionals’ work: “One might summarize the job description as requiring the wisdom of Solomon, the patience of Job and the caring of Florence Nightingale.”
Yet direct-service professionals earn only a dollar or two above minimum wage. This was not always the case. In 2010, direct-service professionals’ starting pay was 50% above minimum wage.
Dramatic increases are needed to make up for a decade of neglect and stagnant wages. Additionally, while direct-service professionals employed by nonprofits provide 85% of services to individuals with intellectual and developmental disabilities, they earn substantially less than those employed by the state.
Gov. Kathy Hochul and the Legislature must include a substantial investment in direct-service professional wages in the upcoming state budget and, equally important, a plan to bring their wages to a level commensurate with what is required of them.
Karen Nagy- Rexford
Margaret Raustiala–Nissequogue
Members, Save Our Services
Social Security Overpays Billions to People, Many on Disability. Then It Demands the Money Back.
Please be aware of the situation even if it has not yet impacted you personally. This has the potential to have significant impact on our loved ones, families and providers.
Article
ABC Story
https://abcnews.go.com/GMA/News/video/social-security-overpaying-billions-americans-103246629
Catholic Charities turning away disability clients
Albany Times Union, Saturday August 26,2023
By Andy Tsubasa Field

The July 19 letter sent by Catholic Charities Disabilities Services
Executive Director Paula Jubic, and obtained by the Times Union,
tells potential clients to withdraw help requests.
ALBANY — A leading nonprofit’s disability services department is turning away potential clients due to a lack of staff.
A July 19 letter sent by Catholic Charities Disabilities Services Executive Director Paula Jubic, obtained by the Times Union, tells potential clients to withdraw help requests. The letter said an ongoing staffing crisis has prevented the department from responding to all requests for services.
“Should you wish to reconsider services through CCDS in the future, your care manager can assist you in doing so, or you may choose to seek services through another agency providing these services which can address your needs in a timely manner,” the letter said.
Jubic said Catholic Charities Disabilities Services has 83 residential staff members, 70 fewer than needed to properly assist residents of its properties. She said the department temporarily closed two houses due to limited staffing and has considered shutting down another where five women who use wheelchairs live. For its largest 14- and 12-bed properties, she said her department is barely scraping by to meet a three-person fire safety standard.
“We’re not getting to people. If they need to go to the bathroom and there are only a few people on and there’s something going on with someone else, that person is waiting,” Jubic said. “And then you’re trying to do medication for 14 people at the same time and each person could have 10 different meds.”
Jubic said CCDS worked with the New York Alliance for Inclusion and Innovation to push for an 11.5 percent cost of living adjustment for those working in nonprofit programs. The actual increase was far lower, meaning the nonprofit could only raise service providers’ wages to $16.80 after undergoing training.
Additionally, Jubic said longtime staff retired during the pandemic, and others more recently have left for higher-paying jobs due to inflation. The staffing shortages have led to administrators covering provider shifts more frequently, she said.
“Weekly, like every week,” said Jubic, who has worked for Catholic Charities for 15 years. “I’ve never seen it to the likes of this.”
Catholic Charities is far from alone in facing staffing shortages.
Agencies that provide human services have for years complained that they don’t get enough state funding to attract enough employees to their workforces.
That problem may have been exacerbated by the COVID-19 pandemic, which prompted numerous retirements, and the inflation in recent years, which have forced people to seek as high a wage as possible.
In June 2022, Catholic Charities closed its Mercy House women and children’s shelter citing a falling headcount and difficulty staffing the 19-bed emergency shelter.
Launch of Care Coordination Program Evaluation

Dear Friends and Colleagues,
In keeping with the goals outlined in our 2023-2027 Strategic Plan, I am pleased to announce the launch of our Care Coordination Program Evaluation, one of several evaluations being conducted to identify opportunities for improvement and to respond to concerns raised by our stakeholders.
OPWDD is partnering with the American Institutes for Research® (AIR) to evaluate the effectiveness of Care Coordination practices. AIR was chosen through a competitive procurement process based on the strength of their application and their extensive experience conducting similar program evaluations for other state and federal entities, organizations, and agencies.
The evaluation will include a review of current procedures, identification of opportunities to streamline processes, research on promising practices, and submission of recommendations to improve the quality of care-managers and the care management model. It will also include opportunities for stakeholders to share their experiences and stories engaging CCO’s.
More information on the progress of the evaluation and opportunities to engage will be shared throughout the duration of the project as part of our ongoing strategic plan updates. In the meantime, if you would like to provide feedback, you can email ARPA.Inquiry@opwdd.ny.gov.
I encourage you to follow along, participate, and to share your thoughts with AIR and OPWDD in the coming months, as we work together to reach health and quality-of-life outcomes.
Sincerely,
Kerri E. Neifeld
Commissioner
Justice Center Contacts
We Want to Hear From You!
| In-Person and Virtual Forums on OPWDD’s Strategic Plan Update |

| Dear Friends and Colleagues,This summer OPWDD has several stakeholder engagement opportunities underway to honor our commitment to work in partnership with you to move our system forward.Today, I am inviting everyone to participate in an opportunity related to our ongoing strategic planning activities. We are hosting in-person and virtual forums to share updates on the progress we are making toward reaching our 2023-2027 Strategic Plan goals and objectives and hearing your feedback.Below you will find the full schedule and registration information for the forums.The forums are open to everyone so I hope you will consider joining us at a forum in your area or an online forum from your own location to listen or to speak.Your voice continues to be important to our work and collaborative efforts to transform our system.Sincerely, Kerri Neifeld Commissioner Date and TimeIn-Person or VirtualLocation 7/28, 1-3 pm In- PersonUpstate Caring Partners 1601 Armory Drive Building C Utica, NY 13501 7/31, 2-4 pm In-Person OPWDD Regional Office 1021 Broadway Street Buffalo, NY 14212 8/3, 5:30-7:30 pm In-Person Westchester Institute for Human Development 20 Plaza West Valhalla, NY 10595 8/9, 6-8 pm In-Person Metro NY DDSO 25 Beaver Street New York, NY 10004 8/10, 10 am-12 pm In-Person Long Island DDRO 415 Oser Ave. Hauppauge, NY 11788 8/11, 2-4 pm VirtualOnline 8/14, 2-4 pm In-Person The ARC Jefferson/St. Lawrence 420 Gaffney Drive Watertown, NY 13601 8/15, 6-8 pm Virtual Online Register for an In-Person ForumRegister for August 11, 2023 Virtual Forum Register for August 15, 2023 Virtual Forum To review the full 2023-2027 Strategic Plan, visit the strategic planning page Strategic Planning | Office for People With Developmental Disabilities (ny.gov) of the OPWDD website To view this announcement in another language, visit We Want to Hear From You! Sign Up for In-Person and Virtual Forums on OPWDD’s Strategic Plan Update | Office for People With Developmental Disabilities (ny.gov) |
Act now to support two critical disability rights issues!

This year, with your support, we defended cuts to Medicaid for the millions of people nationwide who rely on it. But our fight to protect and expand rights for people with intellectual and developmental disabilities isn’t over.
Please join us again in contacting your members of Congress about two priority issues.We desperately need more funding for HCBS so people with disabilities can access the vital care they need to thrive!
Medicaid home and community-based services (HCBS) play a vital role in helping people with disabilities live independently in the community—but a lack of funding for these services has left over 650,000 people stuck on waiting lists.Too many people are in limbo, unsure of when they will gain access to critical benefits, and many live segregated lives in the archaic institutions that still exist in 33 states.
Tell Congress to increase funding for HCBS so life in the community possible for all!
Act Now to Say #CareCantWait
Join us in demanding updates to SSI for the millions of people with disabilities who rely on it!Outdated rules to the Supplemental Security Income (SSI) program force millions of people with disabilities into poverty and prevent many others from getting married for risk of losing their much-needed benefits.Congress can change this by passing the SSI Savings Penalty Elimination Act, which would raise SSI asset limits for the first time in over 30 years and reduce marriage penalties related to SSI asset limits.Tell Congress to Update SSI!
2023-24 ENYDDA-SWAN budget statement
