Intellectual and Developmental Disability News

Developmental Disability News to Know for Week Ending March 2

The AP takes a look at the 7- to 10-year waitlist nationwide for disability services, Rockland County, N.Y., has an upcoming DSP rally, and more developmental disability news for the week ending March 2, 2024.

New York

Rockland rally to demand higher pay for workers who aid New Yorkers with disabilities A rally is planned for March 8 in Stony Point in protest of Gov. Kathy Hochul’s shamefully low proposed 1.5% cost-of-living increase to nonprofits for DSP wages. (lohud.com)

Bill calls for adult changing tables in public spaces across New York “Traveling with Dignity Act” would provide spaces safer and more sanitary to use. (Spectrum Local News)

Long Island high schoolers make sports accessible for people with disabilities “Lacrosse My Heart,” spearheaded by lacrosse players from Roslyn High School, raised funds to support a wheelchair lacrosse team. (nypost.com)

Outside of New York

In NJ, people with disabilities face 7- to 10-year wait for group home funding Almost 4,400 people with developmental disabilities are on the waiting list. (Northjersey.com)

Colorado Medicaid discriminates against people with disabilities: federal complaint Families of people with disabilities are receiving notices that they’re no longer eligible for services, causing panic and delays. (The Colorado Sun)

Colorado bill would limit use of shortened school days for students with disabilities Some states use these shortened school days even if not requested via the learning plan nor are due to disciplinary reasons (doing so is in and of itself highly problematic). (Chalkbeat.org)

Maine lawmakers hear input on bill to have local schools provide pre-school disability services Child Development Services, overseen by the state Dept, of Ed, has been falling short of its responsibilities. (Pressherald.com)

Toledo has created a Mayor’s Office on Disability It’s believed to be the first such office in Ohio. (Toledo City Paper)

The Wait

States offer services for disabled kids, then make families wait 10 years for them A report on the hundreds of thousands of individuals with physical or intellectual disabilities nationwide waiting for state-covered services. (AP)

I/DD

New study estimates almost 1% of adults in US have an intellectual disability With no national survey measuring prevalence of intellectual disability among adults, researchers turned to data collected between 1980 and 1999. (Disability Scoop)

Autism

Autism diagnoses are soaring. Here’s how some colleges are responding The rate of completion for autistic students lags that of general postsecondary population, 39% to 59%. (The Saratogian)

Autistic people held back by job interview questions Interesting report from Great Briatin. (BBC)

Direct Care Workforce

Dept. of Health and Human Services Announces Multi-Pronged Effort to Strengthen Direct Care Workforce It’s meant to address the workforce crisis. Does it? (ACL.gov)

Tech

New ‘smart’ supportive home opens in Montreal to help young people with intellectual disabilities The first in Canada, this (very) expensive house’s features include tech that creates recipes based on what’s inside the fridge and screens that explain how to brush teeth, and for how long. (Globalnews.ca)

‘How We See It’ Photo Exhibit by People with Disabilities

“How We See It: New Images from The Progressive Visions Photo Club and West Farms Photo Works” is an exhibition featuring a collection of images from across New York City taken by people with disabilities who are  members of CP Unlimited photo clubs.

CP Unlimited is a broad-based, multi-service organization serving person’s with all types of intellectual and developmental disabilities. The gallery where the show currently is up, Positive Exposure, serves as a community space dedicated to celebrating human diversity through arts and culture.

Participants in the photo program go on photo outings to explore both their communities and the greater New York City area to discover new creative opportunities and practice their skills using digital, mirrorless cameras, and cameras with specialized shutters and mounting systems.

Details

When: Through Aug. 31, 2024

Where: Positive Exposure Gallery, 14 East 109 St., New York, N.Y., 10021

Your Self-Direction Rights Related to Community Classes Town Hall: March 5

The Coalition for Self-Direction (C4SD), started in November 2023 “to protect the constitutional right of choice” for New Yorkers with intellectual and developmental disabilities (I/DD), is holding a virtual Town Hall to get your questions answered and to get updates from the community.

C4SD recently published the first version of its “Know Your Rights” document. Since then, the org says, some families have been able to use this guide to successfully overturn Community Class reimbursement rejections. However, many others still have questions about how to move forward. At this highly interactive Town Hall, you will:

There are plans to continuously tweak the guide with improvements — and to create additional resources, such as examples of emails and arguments that have worked for others.

Details

When: Tuesday, March 5

Times: 12 p.m. to 1 p.m. or 7 p.m. to 8:30 p.m.

Registration: Pre-register for one session only here.

NYS Developmental Disabilities Advisory Council Public Meeting: March 5

The Developmental Disabilities Advisory Council (DDAC) provides recommendations for statewide priorities and goals for services for individuals with developmental disabilities in cooperation with the OPWDD commissioner. The council has no executive, administrative, or appointive duties. Some of its responsibilities are:

The DDAC meets quarterly. The next one is being held at a variety of locations statewide, as well as virtually.

Details

When: Tuesday, March 5, 2024

Where: In addition to attending virtually, you can attend in person at one of the locations listed below.

Register here

Public meeting of Statewide Family Support Services Committee: March 6

Local Family Support Services (FSS) Advisory Councils throughout New York State, made up of people with developmental disabilities and family members, plan, coordinate and monitor the delivery of FSS across the state. In addition, a Statewide FSS Committee made up of one representative from each of the local FSS Advisory Councils advises OPWDD regarding families’ support needs and the design, implementation and monitoring of FSS.

The next public meeting of the Statewide Family Support Services Committee is coming up at multiple locations and virtually.

Details

When: Wednesday, March 6, 2024

Time: from 11 AM until 3 PM. You can join the meeting in person at the following locations:

Where: The below locations and virtually.

Register: Meeting details and registration link can be accessed here.

Learn the Basics of Self-Direction: March 13

As part of its Transition Workshop Series, Rockland BOCES is offering those whose loved ones are eligible for self-direction a seminar covering some important basics. This is open to families and students with disabilities in all districts.

Some issues being covered:

Details

When: Wednesday, March 13, 2024

Time: 7 p.m. to 8:30 p.m.

RSVP: Email Mary Ellen Urinyi at murinyi@boces.org

Celebrate Black History Month

The Boost has collected some stories from around the web that honor famous (and not-so-famous) Black Americans with disabilities, and which reflect on the realities and challenges that continue to shape the lives of all Black people with disabilities.

And while this is not disability-related, if you can get to Manhattan, try to visit the Metropolitan Museum of Art’s Harlem Renaissance show exploring the “comprehensive and far-reaching ways in which Black artists portrayed everyday modern life in the new Black cities that took shape in the 1920s–40s in New York City’s Harlem and nationwide.” Crowds aside, you’ll be glad you did.

Uplifting stories and reflections

This post from Respect Ability, last updated in 2021, has lots on offer, including this article highlighting African Americans with disabilities.

Check out the World Institute on Disability’s 12 Black Disabled Activists and Advocates You Need to be Following.

On the Special Olympics website read about Harris-Gowdie, who at this year’s Super Bowl in Las Vegas became the first Special Olympics athlete to serve as a fully paid and credentialed correspondent, tune in to this Inclusion Revolution Radio podcast with Special Olympics Great Britain athlete, Matthew Brough, a tennis player who won two medals at the Special Olympics Berlin Games 2023, and explore much more.

The ARC weighs in on the month with Why Black Disabled History Matters

News and studies

From the 74 Million learn about Education as a Civil Rights Issue for Black Students with Disabilities & Families

This important 2023 Rutger’s report, which looked at children within the New Jersey-New York metropolitan region, found that Autism Spectrum Disorder (ASD) rates tripled from 2000 to 2016. Two key takeaways:

In relatively more positive news, a blockbuster 2023 report from the Centers for Disease Control found that autism now affects 1 in 36 kids, but for the first time among children aged 8 years, the prevalence of ASD was lower among White children than among other racial and ethnic groups, reversing the direction of racial and ethnic differences in ASD prevalence observed in the past. (Black children with ASD were still more likely than White children with ASD to have a co-occurring intellectual disability.) This could indicate that efforts to improve screening, awareness and access to services among underserved populations are improving.

Lastly, racial disparities were found to have increased in special education. A 2023 report found that a disproportionate number of students of color (with the exception of Asian students) are being identified for special education, placed in more restrictive educational settings and disciplined at “markedly higher rates” than their peers, according to The National Center for Learning Disabilities (NCLD).

I hope you found these links useful. If you have any you’d like to add, please contact The Boost here.

Open to the Public: President’s Committee for People with Intellectual Disabilities Meeting, March 21

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.

Register for the Meeting

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

More Developmental Disability News to Know for Week Ending Feb. 24

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.

Spotlight

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)

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.

Outside of New York

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)

Autism

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)

Employment

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)

Federal Legislation

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)

Studies

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)

Tech

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)

First Person

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)

Entertainment

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)

Helping Families and Disabled Youth to ‘Think College’ Webinar: March 18

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).

RELATED NEWS: ‘Increasing Joy’: A Q&A with Dan Habib, Award-Winning Filmmaker, Disability-Rights Advocate and Educator

During this webinar attendees will learn about:

RELATED NEWS: Secondary Ed for Students with Intellectual Disabilities Gets New Accreditation Council

Details

When: Monday, March 18, 2024

Time: 2 p.m.

Register here

ASL interpretation & Spanish interpretation will be offered.