The developmental disability community is in crisis and as with many crises, the solutions often come down to money. To help advocate for these individuals learn what’s in, and not in, Gov. Kathy Hochul’s proposed New York State 2024 – 2025 budget on issues ranging from a living wage for Direct Support Professionals to housing, job skill development and more.
One great way is to attend a town hall being presented by NYC Fair, which will put the governor’s budget under a microscope and answer your questions.
Details
When: Thursday, Feb. 29, 2024
Time: 7 p.m. to 8:30 p.m.
Register here.
Do you know a person with developmental disabilities who is looking for a fun relationship? Check out this Scavenger Speed Dating event organized by Brendan Klein, coordinator of Self Advocacy & Community Engagement at the Westchester Institute for Human Development (WIHD), and his awesome Comm Hab support staff. (Note: This is not a WIHD event.)
The evening is for straight people over the age of 21 who can attend without support staff. Its goal is to have people meet someone to go on a special date with 1 on 1. (And then, who knows?) There will be pizza, beverages, chips and dessert nibbles.
Details
When: March 16, 2024
Time: 5:30 p.m. – 7:30 p.m.
Where: 42 Memorial Plaza, Pleasantville, N.Y.
Cost: $10.00 (not covered by Self-Direction)
Application: You must fill out an application! Request one from CJ O’Brien at ceejayobrien@gmail.com or Brendan Klein at bklein@wihd.org.
The Bedford Playhouse in Bedford, N.Y., which has a monthly Sensory-Friendly Film Series produced in collaboration with the Inclusive Initiative, is asking for your feedback.
The monthly screenings are meant to provide a comfortable viewing environment for the neurodivergent, the young, or anyone who might benefit from a more flexible film experience. To help the playhouse make it the best experience possible, it has put together some questions to help ensure the movies it shows are the movies people want to see.
You’ll find the survey here. It’s an easy, fast one!
Photo: Bedford Playhouse (Credit: Phillip Ennis)
New York State’s mission to provide person-centered care to people with intellectual and developmental disabilities (I/DD) is, in theory, designed to help individuals reach their full potential. Crucial to this mission is Self-Direction, which consists of services available to anyone who is eligible for OPWDD services and enrolled in the Home and Community Based Services (HCBS) Waiver.
OPWDD says that Self-Direction gives people the chance to choose their own services so they can “live the life [they] want.” Things you can self-direct include how you spend your days and what you do in your spare time. However, this is hardly as clear-cut as it might seem.
Many community classes, for instance, are not covered by Self-Direction, often because they’re designed specifically for people with I/DD and not open to the general public. The resulting denials for coverage seem to be in direct opposition to a person’s ability to live the life they want — to get out of their homes and into the world — and participate in activities they hold dear or necessary.
Additionally, the Coalition for Self-Direction Families of New York State (C4SD) notes that since November 2022, unofficial “red flag” policies and new exclusions have been invented that make it more and more difficult to get approval for “Community Classes & Publicly Available Training/Coaching.”
In response, C4SD has created a detailed Know Your Rights Document, and is working to create a “match-making” service between people who have been denied classes, and people who can help you.
C4SD writes that there are multiple pathways for appealing a rejection and that we don’t know yet which works. “We do know you must start by getting the denial in writing. … And you will never succeed if you stay silent.”
Its document guides you through the process. Check it out, and keep it handy.
According to the American Academy of Pediatrics, children with developmental disabilities (DD) are more likely to have unmet dental needs than children without disabilities and are at greater risk of developing dental disease, reports the New York State Council on Developmental Disabilities (CDD). Reasons include “use of medicine high in sugar, dependence on a caregiver for regular oral hygiene, and certain physical or behavioral conditions that may impact oral health habits.”
So, in good news, a partnership between the CDD and Touro College of Dental Medicine (TCDM) to increase access to proper dental care for people with developmental disabilities (DD) has resulted in, well, a few things, but for our purposes, a helpful video on dental care.
The video has super helpful tips about how to get individuals who are leery about dental care or find it difficult to do things like brush their teeth to get the dental care they need.
The program, Smiles United, was created in 2020 through a CDD grant. Through the Smiles United initiative, participating group homes and caregivers were surveyed to find out general and specific oral health care challenges they face in taking care of individuals with developmental disabilities at home.
The Smiles United team will continue to make the educational video modules free and readily accessible on the YouTube platform for all individuals and agencies to utilize.
Is help on the way for Direct Support Professionals in New York?
Maybe this time, now that the Direct Support Wage Enhancement bill (S4127- A5268) was reintroduced in January 2024 by New York State Senator John Mannion and Assemblymember Rebecca Seawright. The bipartisan legislation would provide a $4,000 wage enhancement to employees who provide direct care support to individuals with developmental disabilities.
RELATED NEWS: Buffalo News Editorial Board: Give Pay Parity to the State’s Direct Support Workers
“Without state funding to offer more competitive wages against other labor markets like food service or the retail industry, nonprofit provider agencies cannot effectively recruit and retain staff or maintain services,” reads Mannion’s announcement.
Direct Support Professionals (DSPs) are committed professionals whose mission is to help people with intellectual and developmental disabilities (I/DD) thrive. Underpaid and overworked despite the critical care they provide, many have left or are leaving a profession they believe in because they can’t afford to live.
The already critical shortage of DPSs is “further exacerbated in [a growing number of states] due to changes and cuts to Medicaid and waiver programs,” reports the Autism Society. New York pay is not keeping up with inflation.
RELATED NEWS: Disability service providers asking Hochul for more money in new budget
In May 2023, Hochul signed a budget that failed DSPs statewide. Not only was there no needed pay hike, they didn’t even get a living wage. The $229 billion 2023-2024 budget landed on a small, 4% cost of living increase that doesn’t keep up with inflation.
March is Developmental Disabilities Awareness Month and this year’s theme is “A World of Possibilities.” In celebration, New York State’s Council on Developmental Disabilities (CDD) would like to highlight self-advocate artwork in a digital art gallery illustrating what people enjoy doing now or hope to do in the future.
Self-advocates who would like to participate should:
The picture could be included in an art gallery slide show during the month of March to be featured on CDD social media, in newsletters and other materials.
Questions? Email information@cdd.ny.gov.
Gov. Kathy Hochul just finished signing the last of the New York State legislation passed for the 2023-2024 budget and Albany is already heating up with negotiations for the next one. The biggest fight to come will surely be over Medicaid.
New York’s Medicaid has grown 11% over the last year alone, to a total $35 billion within the state’s overall spending plan, reports NY1. In response, Hochul says she is looking to save more than a billion dollars in Medicaid. State democrats last week proposed alternative changes that “evade” Hochul’s proposed cuts, reports Spectrum Local News. Read about them at the Spectrum link.
The Autism Society reports that on Jan. 30, three Democrat U.S. representatives reintroduced the SSI Restoration Act. “Currently, over 69 million people receive benefits from Social Security, SSI, or both, including nearly 14 million people with disabilities and their spouses and children,” it writes.
“This bill would improve SSI by streamlining the claiming process, increasing asset limits, setting the minimum benefit at 100 percent of the Federal Poverty Level, and eliminating punitive reduction in benefits. The SSI Restoration Act would strengthen SSI by supporting independent living of individuals with disabilities and allowing individuals with disabilities to engage in independent work without fear of losing benefits.”
The New York Alliance for Developmental Disabilities (NYADD) reports that a bill has been proposed to compensate family members for caring for their medically fragile children, ages birth to 21 years old, who would otherwise require private-duty nursing services.
The New York Assembly CCA bill would require the state Medicaid director to establish a program for specific individuals to become complex care assistants and provide private duty nursing services to certain Medicaid enrollees under increased reimbursement rates, allowing disabled individuals to remain in the home. It provides families with training, oversight and certification.
FYI, the Consumer Direct Personal Assistance Program (CDPAP) does not allow for parents to be paid to care for children under age 21.
Image: Wikimedia Commons
A group home fiasco in New Jersey, a father’s journey into holistic “fixes” for his son, why it’s impossible to find housing on SSI and more developmental disability news for the week ending Feb. 10, 2024.
N.J. leaders vow to toughen group home oversight A Feb. 1 special report by NJ Advance Media, “Alone, Autistic and Afraid,” which examined medical neglect and maltreatment of a non-verbal young woman, has resulted in the proposal of a bill to empower the state departments of Human Services and Children and Families to fine group home operators that put people in harm’s way.
The story that set it in motion is frightening. The “final showdown,” for instance, was when a security guard blocked the family from entering the home, saying they needed to make an appointment. The group home in Ocean County is run by the Special Children’s Center in Lakewood.
In the report, Paul Aronsohn, New Jersey’s Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families, noted that aside from revoking a license, the current law does not allow state regulators to levy fines against group home providers to demand improvements and punish blatantly harmful behavior.
NYC transit could be free for low-income seniors, disabled people for $67M: report The cost may seem high — but it’s less than the $95 million the city budgeted this fiscal year for its Fair Fares program. (Gothamist)
Ulster County seeks to improve transit and mobility for seniors and people with disabilities (News 12 Westchester)
Kansas is poised to expand tax credit for helping disabled workers after debate over low pay The bill also would create a program for “sheltered workshops” to start paying workers at least the federal minimum wage. (Associated Press)
Illinois Wants to End Oversight of Developmental Disability Institutions Advocates say the state is failing to live up to the promise it made in a 13-year-old federal consent decree to serve people in the community. (ProPublica)
Oklahoma sends a growing number of kids with complex needs out of state for treatment The state lacks options for kids with developmental disabilities and mental health needs. (The Frontier)
Searching for Help for My Son’s Autism Diagnosis in the World of Alternative Medicine & Anti-Vaxxers This fascinating account chronicles a family’s journey into holistic “remedies,” concluding, “I can no more believe in goblets of magic water and occult energy than I can conceal my disappointment with ‘neuro-radiology.'” (Skeptic Magzine)
Autism Justice Center: FYI, the Autism Society’s website now has a section dedicated to its Justice Center to help people with developmental disabilities deal with discrimination in areas such as housing, healthcare, and the criminal legal system. See the new website here: Autism Justice Center | Autism Society.
The Census Bureau halts changing how it asks about disabilities following a backlash Disability advocates argued that proposed changes would artificially reduce their numbers by more than 40%. (Associated Press)
SSI Recipients Can’t Afford Housing Anywhere In The US Even in the cheapest rental market in the country — Dallas County, Mo. — rent for either a one-bedroom or efficiency would require 64% of a person’s monthly SSI payment. (Disability Scoop)
Work has become more flexible post-pandemic. So should special education. “We can meet the needs of students with disabilities, including those who are more successful in a hybrid design.” (Chalkbeat)
Medical Schools Are Not Preparing Us to Care for Autistic Individuals (Med Page Today)
Westchester Institute for Human Development (WIHD) is offering a three-workshop series to share instruments and methods used to support loved ones with disabilities in making choices as they approach the age of adulthood
WORKSHOP #1
Supported Decision-Making (SDM), Guardianship, and other Alternatives
Many parents and caregivers have questions about how best their loved one with intellectual and developmental disabilities may be supported in making decisions as an adult. What are the concerns around guardianship? What about Supported Decision Making? How do advance directives such as health care proxies and durable power of attorney factor in?
This workshop should be taken before the Guardianship and Digging into Supported Decision-Making workshops.
Details
When: Feb. 13, 2023
Time: 12 p.m. to 1 p.m.
Zoom Registration Link: Click Here
WORKSHOP #2
Digging into Supported Decision-Making
This workshop is intended for individuals who have already attended the monthly Supported Decision Making, Guardianship, and other Alternatives workshop, and want to know more about SDM. It will review Article 82, the NY State supported decision-making law, and will answer SDM-specific questions.
Details
When: Feb. 15 2024
Time: 12 p.m. to 1 p.m.
Zoom Registration Link: Click Here
WORKSHOP #3
Guardianship Workshop
This workshop is intended for individuals who have already attended the monthly Supported Decision Making, Guardianship, and other Alternatives workshop, and have determined that guardianship is the most appropriate alternative. Since guardianship is considered the most restrictive form of decision support, it is recommended that you also attend the Digging into Supported Decision-Making workshop before signing up for this one. It will review the process of putting together a petition for guardianship and the documentation requirements.
Details
When: Feb. 16, 2024
Time: 12 p.m. to 1 p.m.
Zoom Registration Link: Click Here