The President’s Committee for People with Intellectual Disabilities (PCPID) typically meets twice a year, and its sessions are always open to the public. The upcoming March 21 meeting will discuss the future of Home and Community-Based Services (HCBS), as well as the recommendations identified by four PCPID workgroups as they relate to the HCBS areas of direct support professionals, employment, community living, and Federal support programs.
This discussion will help develop a framework for the preparation of the PCPID Report to the President.
Quick background: PCPID was established in 1966 by President Lyndon B. Johnson. It advises the president and the secretary of health and human services on a broad range of topics that impact people with intellectual disabilities, as well as the professional fields that support people with intellectual disabilities and their families.
Comments: Stakeholder input is very important to the PCPID. Comments and suggestions especially from people with intellectual disabilities, are welcomed. If there are comments related to HCBS or other areas that you would like to inform the PCPID, please share them through the following ACL.gov link: https://acl.gov/form/pcpid.
Details
When: Thursday, March 21, 2024
Time: 12 p.m. – 5 p.m.
This meeting will include CART and American Sign Language (ASL) services. If there are additional reasonable accommodation requests, please contact jwelborn@sensisagency.com and jokim@sensisagency.com by Thursday, March.
Photo: Creative Commons
New federal bills introduced to make voting more accessible, NYS Governor considers kneecapping CDPAP, Amy Schumer show lovingly depicts life with an autistic husband and more developmental disability news for the week ending Feb. 23, 2024.
Half of New York direct support professionals experience housing or food insecurity, report shows The report lays bare the punishing result of paying this critical, committed workforce a non-living wage. This is an exclusive from Crain’s, which has a tough paywall, but you can also find it on the New York Disability Advocates (NYDA) Facebook page. NYDA commissioned the report, which I hope helps move legislators to finally do the right thing and include an 8.5% COLA increase for the I/DD service sector. (Crain’s New York)
Gov. Kathy Hochul recently released amendments to her proposed 2024-25 budget. The annual occurrence is meant to consist of mostly technical fixes, but instead, it went for the jugular. Among other things, “the Governor proposed 15 pages of new changes that would, in many cases, fundamentally change CDPAP,” or the Consumer Directed Personal Assistance Program, writes CDANY executive director Bryan O’Malley in a statement. And not for the better.
If you’re interested in CDPAP, I strongly recommend you read this CDANY update.
Arizona moms of children with disabilities can now get paid as full-time caretakers Gov. Katie Hobbs has expanded a program called KidsCare for up to 10,000 children and officially secured a federal government waiver for the expansion, all thanks, of course, to some relentless moms. (12news.com)
In Kansas, People With Disabilities Score Equal Pay It joins 14 other states in banning a practice that lets companies pay people with disabilities way below minimum wage. (The Lever)
Pennsylvania Classroom Converted Into Simulated Apartment To Boost Life Skills (Disability Scoop)
Which States Are Most Supportive for Raising a Child with Autism? Autism Parenting Magazine created a guide of the most supportive, and least supportive states.
Study Finds Widely Available Drug May Lower Anxiety In Those With Autism (Disability Scoop)
Son’s autism inspires Chicago dad’s custom cookies bakery This is lovely, but as usual, it’s unfortunately up to parents to do what’s right for the I/DD community. (Chicago Sun-Times)
Two Dem Senators Introduce Bills to Make American Democracy More Accessible to People with Disabilities Casey, Klobuchar intro the Accessible Voting Act, the Removing Access Barriers to Running for Elected Office for People with Disabilities Act and the AID (Accessibility and Inclusion to Diversify) Local Government Leadership Act. (Casey.senate.gov)
How Common Is Intellectual Disability Among Adults? I take studies with a grain of salt, but this one is important in that it “offers policymakers and other stakeholders a snapshot of the need for resources.” (Disability Scoop_
Intellectual Disabilities Linked With Worse Cancer Survival A small study, but it speaks to a larger issue: How difficult it is to find good medical care for people with I/DD. (Medscape.com)
The Evolution of Smart Home Technology for People With Disabilities Tech has advanced for people with physical and cognitive impairments. (Home Care Mag, via Disability Thinking)
I am medically fragile and use a wheelchair. Here’s what makes college possible for me. I love the main takeaway here: None of us are independent. (Chalkbeat)
Amy Schumer on Autism, Antisemitism and Pulling From Her Marriage for ‘Life & Beth’ Season 2 I recommend this show on Hulu, at least, Season 2, which follows the lead character’s relationship with a man eventually diagnosed with ASD, who is based on Schumer’s husband, Chris Fischer. (Hollywood Reporter)
Join Think College for a free webinar to learn about the current picture of inclusive higher education in the U.S., and hear from college students with intellectual disability from around the country, along with educators and family members, to learn how we can “Think Higher. Think College.” together.
Think College provides resources, technical assistance and training related to college options for students with intellectual disabilities, and manages the only national listing of college programs for students with intellectual disabilities in the U.S.
The webinar is being presented by Dan Habib, project director and documentary filmmaker at Inclusive Communities, part of the Westchester Institute for Human Development (WIHD).
During this webinar attendees will learn about:
Details
When: Monday, March 18, 2024
Time: 2 p.m.
ASL interpretation & Spanish interpretation will be offered.
Many families make it successfully through OPWDD eligibility for Self-Direction only to struggle with the next stages of the process. This includes finding a broker, especially since there seem to be fewer available than ever.
Learn about the steps involved in becoming a Self-Direction Startup/Support Broker, or just learn about what their roles and responsibilities are in greater detail. Join a panel of expert guests for a presentation and discussion of Self Direction brokerage.
Presented by the Marlene Myerson JCC in Partnership with In the Driver’s Seat.
Details
When: Thursday, Feb. 29, 2024
Where: In-person or online. Address: 334 Amsterdam Ave, at W. 76th St, NYC, 10023
Time: 12:30 p.m. – 2 p.m.
Cost: $25
Are you a person with a disability, a graduate student in a disability-related field, or a parent/sibling of an individual with intellectual/ developmental disabilities? Consider applying to the Westchester Institute of Human Development (WIHD) LEND Program as a trainee for 2024-2025.
LEND stands for Leadership Education in Neurodevelopmental and Related Disabilities. The program at WIHD is a two-semester interdisciplinary leadership training program — one of 60 nationwide funded by the Maternal and Child Health Bureau (MCHB) of the Federal Government. LEND Program participants graduate with competencies required by family leaders and advocates in the field of developmental disabilities.
Demonstrated interest in working with individuals with disabilities and their families meeting one or more of these criteria:
You can find much more about the program, and find the application, here.
This is a guest post from Katy Foxen Faivre, Administrator, New York Alliance for Developmental Disabilities (NYADD)
As New York State budget negotiations begin in earnest, self-advocates, families, service providers and members of the New York State Senate and Assembly raised their voices and gave testimony in Albany on Monday, Feb. 12 in support of getting people with developmental disabilities the money they need to live healthy, safe lives.
Assemblymember Rebecca Seawright, chair of the People with Disabilities Committee, summed up the dire situation in her opening statement, saying, “The prognosis doesn’t look good.”
Advocates need to reach out to their legislators to demand that they prioritize these funds. There’s strength in numbers. The people elected into office must know that our votes count.
Applied Self-Direction, a national hub that provides technical assistance, training, and community to stakeholders in self-directed services, conducted an extensive national survey of self-direction programs in the U.S. The research revealed eight key findings on the growth of self-direction, along with data on program expansion and ideas for future policy development.
Highlights
RELATED NEWS: Self-Direction and Community Classes in NYS: Know Your Rights
Self-direction empowers people with disabilities to decide for themselves how, when, and from whom they receive services and supports. Self-direction theoretically affords participants more choice, control, and flexibility relative to other models of care.
Study methods: Self-direction program data were collected from October 2022 through February 2023. We first conducted a comprehensive review of publicly available information via state Medicaid waiver applications, Medicaid state plan documentation, and state websites across all 50 states and the District of Columbia. Building on these findings, we conducted 65 interviews with state agency staff from 43 states and corresponded with administrators in every state. Read more here.
Four individuals with I/DD sue over “discriminatory” guardianships, New Jersey injects money into getting people with disabilities out of nursing homes, a deep dive into Applied Behavior Analysis and more news for the week ending Feb. 17, 2024.
Do you know about the 1 in 36 podcast from the Anderson Center for Autism? Named after the prevalence of autism spectrum disorder (ASD) among children in the U.S., it describes itself as addressing “hot topics affecting the autism community in the Hudson Valley and beyond.”
It features host Eliza Bozenski of Anderson Center for Autism, along with celebrity guests, professionals in the field, community partners and more. Find out more about it here, including when and where you can tune in.
People with disabilities demand fund in N.Y. budget to permanently raise staff pay At the Feb. 12 rally in Albany, DSPs said they no longer want to have the same fiscal battle with state lawmakers over their salaries each year. (Spectrum News)
Disability rights group sues state over guardianship system Four people with I/DD allege that “illegal and discriminatory” guardianships over them have violated their rights to due process and equal protection. (Timesunion.com)
Rockland BOCES opens preschool to connect kids with key education support earlier Children age 3-5 with an IEP can access free preschool. But only if there’s space. (lohud.com)
NJ to spend $6 million to move people with disabilities out of nursing homes Advocate says money alone won’t solve the housing problem. (northjersey.com)
$3.7 Million grant expands Abilis assistance for those with disabilities in Stamford The non-profit provides therapeutic services for over 800 individuals. (Westfair Business Journal)
Oklahoma Bills Would Give Full-Tuition Scholarships to Students with I/DD (Enid News & Eagle)
The Argument Over a Long-Standing Autism Intervention Applied Behavior Analysis therapy has a troubling history, and even many supporters say it was used too widely in the past. But has criticism of the practice gone too far? (The New Yorker)
At 17, she found out she was autistic. It’s a story that’s becoming more common. An interview with Journey Early from Love on the Spectrum. (USA Today)
Young cheerleaders with disabilities in Cumberland County, Pa., are headed to Disney for competition They’re on their way to the Disney World Cheer Competitions. (PAhomepage.com)
With New Season, ‘The Good Doctor’ Adds Character With Autism (Disability Scoop)
Going to the movies shouldn’t be a stressful activity. To keep it fun, a growing number of movie theaters are presenting sensory-friendly film screenings to those who need less restrictive, more flexible environments, ones sensitive to sound and light.
Here’s a sampling of upcoming sensory-friendly events in New York.
Movie: The Super Mario Bros. Movie
When: Sat., Feb. 17. 2024
Where: 633 Old Post Rd, Bedford, N.Y.
Time: 12 p.m.
Movie: The Land Before Time
When: Sunday, March 10, 2024
Where: 364 Manville Rd, Pleasantville, N.Y.
Time: 11 a.m.
AMC partners with the Autism Society to offer unique movie showings where the lights are turned up, and the sound turned down, and where people can get up, dance, walk, shout or sing. Its Sensory Friendly Film program is available on the second and fourth Saturday (family-friendly) and Wednesday evenings (mature audiences) of every month.
Check your local theatre listings for specific showtimes, and/or check out this link which will point you to AMC sensory-friendly films.
Image: DeviantArt
The next virtual meeting for Hear Our Voices, a program from the Community Support Network at Westchester Institute for Human Development (WIHD), is coming up.
The program is aimed at empowering, educating and developing social connections for self-advocates. If you know someone with disabilities anywhere in New York State who is interested in self-advocacy, have them check it out.
Details
When: Feb. 21, 2024
Time: 6 p.m. to 7 p.m.
Registration Link: Click Here