CDPAP’s bumpy road continues, a N.J. gubernatorial candidate says people with disabilities would be a priority, Congress extends Autism CARES Act, and more developmental disability news for week ending Jan. 10, 2025.

Spotlight: Jackie Ceonzo

New York City mom sets out to improve life for her son with autism (Good Morning America)

Jackie Ceonzo, founder and executive director of the nonprofit SNACK & Friends and a lead advocate with the Coalition for Self Direction Families of NYS (C4SD), was given a much-deserved segment on Good Morning America’s Trailblazing Women series.

The segment shares the story of Ceonzo’s oldest son, Joey, being diagnosed with severe autism at a time autism was not part of the national conversation. After Joey was turned down from participating in even special needs activities, Coenzo says, she got to work, launching SNACK in 2003.

“As a country we have not invested in this population at all,” Ceonzo tells GMA. “We’ve just kicked the can down the road.”

New York

Another Voice: Direct service professionals need our support NYS Assemblywoman Karen McMahon on the critical need for the state to include a 7.8% Medicaid pay rate increase “to stabilize services for people with disabilities.” (Buffalonews.com)

Private Insurers Must Now Cover Dyslexia Testing in New York The bill is the first of its kind passed in the U.S. for diagnostic tests known as neuropsychological exams. (New York Times)

Kids with dyslexia still leaving NYC public schools despite Mayor Adams’ pledge “The dysfunctional system that divides students who struggle to read between the haves and have-nots largely persists.” (Gothmist.com)

State to review traumatic brain injury care The legislation directs the state’s Traumatic Brain Injury Services Coordinating Council to conduct a statewide review of brain injury care. (Times Union)

Mother’s dedication to helping daughter inspires traumatic brain injury legislation in N.Y.  (Spectrumlocalnews.com)

Buffalo Niagara International Airport to launch Hidden Disabilities Sunflower program (Spectrumlocalnews.com)

Consumer Directed Personal Assistance Program (CDPAP)

What to know as NYS begins CDPAP transition amid legal limbo For one, aides may not be paid the same rate they earn now, but Public Partnerships isn’t ready to say how much aides will be offered. (Times Union)

Judge puts CDPAP transition partially on hold The order prevents the DOH from requiring All-American Homecare to convey to “any third party” information about consumers and their personal care workers. (Waer.org)

Court ruling throws wrench in New York state’s Medicaid home care program transition The decision sets a precedent that could open the transition up to other legal challenges of companies transferring confidential patient data. (Spectrumlocalnews.com)

Over 1,000 callers hit new Medicaid home care transition hotline What a mess, although the article notes that one group had people call in before the hotline’s official start. (Spectrumlocalnews.com)

Outside of New York

Sweeney: As NJ governor, I will make people with disabilities a top priority | Opinion (Northjersey.com)

DOJ finds Oklahoma City police discriminate against people with behavioral disabilities The city unnecessarily institutionalizes adults with mental illness and the police department often escalates crisis situations. (AP)

Kentucky mother wants to expand who can have cameras in residential facilities (Kentuckylantern.com)

New Alabama law requires firefighters to complete invisible disabilities training NYS, FYI, has no mandate, but does offer first responder training. (Wsfa.com)

Education

Special ed students benefit from being integrated at school. It doesn’t always happen (NPR)

AI is a game changer for students with disabilities. Schools are still learning to harness it Getting the latest technology into the hands of students with disabilities is a priority for the U.S. Ed Dept. Of course, there are concerns. (AP)

Autism

Congress extends Autism CARES Act for 5 more years The federal law will provide nearly $2 billion for research, training and services, including for early detection and interventions. (k12dive.com)

How Electroconvulsive Therapy was life-changing for one teen with autism and catatonia (Colorado Public Radio)

Genetic Testing May Alter Care For Almost Half With Neurodevelopmental Disorders A new study finds that 42% of those who did genetic testing learned that they had or likely had a rare genetic condition. (Disability Scoop)

Medicaid

Ed Dept pulls school-based Medicaid proposed rule Supporters said the rule make it easier for schools to be reimbursed for school-based Medicaid services. (k12dive.com)

Entertainment

Hollywood’s Disability Coordinators Streamline Production, Expand Access Production Access Coordinators play a burgeoning new role in the entertainment industry. (Thewrap.com)