January 27, 2023

Thank You!

We would like to thank all of our members and supporters for their generous donations to our 2022 Year-End Fundraising Campaign. It's families like yours that have sustained our work for the past 40 years.

We are grateful for your contributions.

Thank You!

We would like to thank all of our members and supporters who participated in our January Networking Meeting. We love speaking with you and sharing our experience.

Stay tuned for our next quarterly meeting!

Another Way to Say Thank You

Stay tuned for our Valentine's Day Celebration.

Send a Valentine to your loved ones and the Direct Support Professionals who give so generously to caring for our folks with I/DD and autism.

Massachusetts - Continuing Drop in Number of Residents Threatens Continued Existence of DDS State-Run Facilities

By David Kassel, The COFAR Blog, January 26, 2023

New data that COFAR has received from the Department of Developmental Services (DDS) shows the number of residents or the census at both the Wrentham Developmental Center and Hogan Regional Center continued to drop from Fiscal Years 2019 through 2022.

The data, which was provided by DDS last week under a Public Records Law request, shows that as of Fiscal Year 2022, the census at the Wrentham Center was 182, down from a high of 323 in Fiscal 2013 — a 44% drop. The census at Hogan was down to 95 in 2022, from a high of 159 in 2011. That is a drop of 40%.

Previous data from DDS showed that the total census in the state-operated group homes declined from a high of 1,206 in Fiscal 2015, to 1,097 in 2021 — a 9% drop.

Meanwhile, the census in the state’s much larger network of privatized group homes has continued to climb, rising from 6,677 to 8,290 between 2008 and 2021 — a 24% increase. (See the graphs below.)

Hogan now has well under 100 residents remaining, and Wrentham is well under 200. Since August 2021, DDS has closed seven state-operated group homes and subsequently reopened one.

But more troubling than those closures is the fact that DDS does not inform individuals and families seeking residential placements that these state-run facilities even exist. Last fall, we wrote about a rare admission to the Wrentham Center, but that appears to have been the exception. We have heard from several people who have been unsuccessful in seeking placements for their loved ones in either ICFs or state-operated group homes.

That policy decision by DDS to discourage or block new admissions guarantees that the number of residents in state-run residential care will continue to drop, and that the ICF’s, in particular, will eventually be closed.

DDS says it has no records on plans to close Wrentham or Hogan

Despite the continuing downward trend in the census at Wrentham and Hogan, DDS said in response last week to our Public Records request that they have no records concerning projections or plans to close those facilities. We have appealed that response to the state supervisor of public records, arguing that the Department did not indicate that it had done a search for such internal plans or projections.

Given the declining census at both Hogan and Wrentham, we believe it is unlikely that there are no departmental emails or other records at least discussing the possibility that these facilities will eventually close.

ICFs and state-operated group homes are vital backstops for care

State-run residential facilities are vital to the fabric of care in the DDS system. As Olmstead v. L.C., the landmark 1999 U.S. Supreme Court decision, recognized, there is a segment of the population with I/DD that cannot benefit from and does not desire community-based care. ICFs, in particular, must meet stringent federal standards for care that make them uniquely appropriate settings for persons with the most profound levels of disability and medical issues.

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Salary Bump Coming for Texas State Hospital and State Supported Living Center Workers

By David Barer, KXAN Investigates, January 24, 2023

The Health and Human Services Commission is raising salaries and starting wages at state mental hospitals and state-supported living centers to shore up chronic understaffing, turnover and bed shortages, the agency announced Tuesday.

“Increasing starting salaries will bolster HHSC’s recruitment and hiring of prospective employees, help us get fully staffed, and serve more people in need,” said Scott Schalchlin, deputy executive commissioner for HHSC’s Health and Specialty Care System, in a news release.

HHSC is trying to fill nearly 4,000 vacancies, including more than 1,800 in state hospitals and 2,100 in state-supported living centers, or SSLCs.

A registered nurse with three years’ experience would start as high as $90,000, while the previous average salary for that level was $67,000. There are 500 nursing positions open across the state, HHSC said.

Psychiatric nursing assistants and direct support professionals would start between $17.50 and $21 an hour for positions that previously had starting average salaries of $14.90 to $15.70 per hour. Food service workers could begin with pay as high as $13.94 an hour for jobs that had an average starting wage of $11.02, according to HHSC.

KXAN has reported extensively on problems caused by HHSC’s staffing woes. More than 770 beds are currently offline at state hospitals. Without those beds available, more than 2,500 people with criminal charges, and found incompetent to stand trial, have been waitlisted and left in county jails for months or years until a bed becomes available, according to the most current state data available from December.

State hospitals serve individuals with mental illness. About two-thirds of state hospital beds are used for people involved in the criminal court system, and the remaining third are assigned to civil commitments, according to state data.

On March 1, salary increases will go into effect for 7,855 full-time state hospital positions and nearly 11,800 SSLC positions. SSLCs provide services and support for developmentally and intellectually disabled people. There are 13 SSLCs across the state.

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New York - Hochul Must Help New Yorkers with Disabilities

By Mike Alvaro, NY Daily News, January 24, 2023

The mission of the disabilities service sector is to empower individuals with disabilities and their families and ensure they have the support and resources they need. After working in this sector for more 30 years and now as the new president of New York Disability Advocates, a statewide coalition of more than 300 nonprofit intellectual and developmental disabilities (I/DD) provider agencies, I have seen firsthand how our services transform the lives of our community members for the better.

I also have too clearly seen the pain and constant burden of worry our community experiences when we fall short. New York’s I/DD community has been fighting against a crisis for more than a decade — and we’ve reached a tipping point. With rising costs of inflation, coupled with the widespread staffing shortages and chronic underfunding that have plagued us for more than a decade, the future viability of the I/DD service sector hangs in balance.

Direct Support Professionals (DSPs) provide important practical and administrative support such as first aid and CPR, administering medication, meal preparation, or transport facilitation, as well as attending to the unique social, emotional, and psychological needs of those they care for.

Quite simply, they help people with disabilities live fulfilling lives.

But without the necessary state funding to offer higher wages in a competitive labor market, Direct Support Professionals are leaving their positions in droves. From a recently conducted NYDA survey there are currently 19,788 direct care positions in New York that remain vacant in nonprofit agencies. This is largely due to an hourly rate that’s just above minimum wage. Given the amount of training and high skill requirements needed to become a Direct Support Professional, many in the labor market, including a large number of current DSPs, are turning to jobs in the fast food and retail sectors, which offer more pay with a lower barrier of access. As a result, the statewide average vacancy rate across the state is nearly 20%, according to the same NYDA survey.

Because of this, high turnover rates are costing the state’s nonprofit provider agencies an additional $100.5 million annually. This is an unnecessary annual cost that no organization cannot afford. In order to account for this high turnover cost, provider agencies are forced to cut, or all together eliminate, funding for other essential programs and services that our community depends on. Given that each and every service that provider agencies offer are engineered to support and create fulfilling lives for individuals with I/DD, the loss of even one of these services greatly impacts those who rely on it.

To truly overcome the challenges facing our sector, we need long-term solutions to recruit and retain staff and meet rising costs.

The health and well-being of New Yorkers with I/DD will remain in constant jeopardy without permanent investment in DSP salaries to recruit and retain staff. While the 5.4% Cost-of-Living-Adjustment (COLA) in the state FY 2023 budget was the first step in the right direction, more investments are crucial to dig the I/DD sector out of its decades-long underfunding crisis.

That’s why it’s crucial that Gov. Hochul make the I/DD community a priority in her upcoming Executive Budget. The future viability of the I/DD service sector requires sustained long-term investment, not a Band-Aid on a bullet wound.

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Maine - Mills Budget Proposes Revamping Intellectual and Developmental Disability Services

A lifespan waiver could ensure people receive consistent care throughout their lives. But more needs to be done to make sure those services are available, advocates say.

By Caitlin Andrews, Maine Monitor via Penobscot Press Herald, January 20, 2023

After years of talking about it, Maine’s health department is proposing to spend millions to clear a backlog for people with intellectual and developmental disabilities who need state services, and to change the way those services are delivered.

The changes, included in Gov. Janet Mills’ proposed $10.3 billion two-year budget plan, would represent a significant change for the programs that provide services for thousands of people with intellectual and developmental disabilities, and their families.

The state currently provides residential housing and support services for people with disabilities through its Section 21 and 29 waiver programs. A waiver is the funding mechanism that allows people with disabilities to receive nursing-level care instead of being institutionalized. They are primarily paid for by federal Medicaid dollars.

But those programs have historically faced waitlists, and people transitioning from school-provided services to adult services are often at risk of running into a service cliff, or losing that care as they transition. That can cause people to backslide developmentally and affect their ability to be independent in the long run.

Office of Aging and Disability Services data dating back to June 2008 shows the waitlist for Section 21 services – the highest level of support for people who need near-constant supervision to keep them safe – was at a record high of 2,028 people in September 2022, the latest information available.

The Section 29 waitlist – more geared toward in-home care and work support – has been mostly declining since 2020 and stood at 218 people in September.

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Related: Press Release from Maine's Department of Health and Human Services:

Governor Mills’ Budget Proposal Supports Access and Innovation in Services for Maine People with Intellectual Disabilities

Press Release, January 19, 2023

Governor Janet Mills’ biennial budget proposes $84 million to support access and innovation in services for individuals with intellectual and developmental disabilities (IDD) and brain injury. The proposed funding addresses access by adding individuals to Maine’s IDD programs and keeping pace with inflation through additional cost-of-living rate adjustments. The budget promotes innovation with a new Lifespan program that simplifies and centers the program on the people it serves and their changing needs and plans. Initiatives include:

• $34 million to enroll an additional 900 people in the Section 29 IDD waiver program during the first 18 months of the biennium (July 1, 2023, through December 31, 2024). This will enable the Department to eliminate the Section 29 wait list and keep up with new applicants. As the workforce shortage persists, Section 29 offers flexible options to individuals and families who may choose services delivered through traditional provider agencies or self-directed supports that allow individual to identify supports outside the normal provider network.

• $3 million to continue enrolling people served on an emergency basis under Section 21. These funds will sustain the 50 reserved enrollments authorized in last year’s supplemental budget.

• $42 million for future cost-of-living adjustments for Sections 18, 20, 21, and 29, Intermediate Care Facilities for Individuals with IDD (ICFs/IID), and PNMI Fs. This funding anticipates the need for additional cost-of-living adjustments over the biennium.

• $5 million to launch a new Lifespan program, which will enroll 50 adults and 40 children per month beginning in January 2025 for a total of 540 enrollees in the biennium.

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Oklahoma - DDS Hosts Regional Meetings for Waitlist Families

Oklahoma Human Services Department, January 24, 2023

DDS Hosts Regional Meetings for Waitlist Families

Families who applied 7 – 10 years ago invited to attend.

The Oklahoma Human Services Developmental Disability Services division (DDS) is hosting the second round of regional meetings across Oklahoma as more families transition off the waitlist.

More than 400 people attended the DDS regional family meetings in December. These meetings, called PossABLE, are designed to help families coming off the waitlist to unite with providers to access services, to reimagine what the future holds and work towards making it a reality.

“Families arrive unsure about next steps, but they leave with all their questions answered and hope for what lies ahead,” said DDS Division Director Beth Scrutchins. “Our goal is to make sure they know Oklahoma Human Services is here for them and will help them every step of the way.”

Eligible families will receive invitations to regional meetings based on their application date. The meetings will take place in February and March 2023 for families who applied for DDS services between April 2012 and January 2016.

Sessions will take place from 10 a.m. to 2 p.m. on the following dates and locations: 

• February 28 in Ardmore  
• March 1 in Norman   
• March 4 in Oklahoma City 
• March 6 in Broken Arrow
• March 8 in Stillwater

Registration is required and the meeting is free. A $100 stipend is available for families who need to offset the cost of attendance for travel or hiring a caregiver. Families who have attended previous meetings can register to attend but will not receive the stipend.

Call 844-944-9301 or visit this page to sign up, receive location details and learn about the stipend

This press release is available here.

California - COVID-19 has killed more than 1,000 with Developmental Disabilities, per state data

Local News Matters, January 20, 2023

Over 1,000 adults with intellectual and developmental disabilities (IDD) have died from COVID-19 in California since the beginning of the pandemic, according to the most recent January data from the state’s Department of Developmental Services.

As of Jan. 6, 1,021 people with IDD have died throughout the state.

Much has been reported about COVID-19’s impact on school children who had to pivot to remote learning, but people with IDD also had to adjust to no longer being able to go to their day programs or, for some more independent IDD residents, having someone drop in on them to help them pay their bills, check their medications, or simply provide company.

For those who need more support from direct contact with a provider — say, people with cerebral palsy who need assistance with personal care, or people who have conditions that require full-time staffing — the pandemic posed a greater challenge, not only for the people with disabilities but also for their staff.

Though people with IDD cannot be compelled to get vaccinated, their staff was required to. The Department of Developmental Services (DDS) eventually mandated that all staff interacting with IDD clients get the vaccine in September 2021.

Still, by December of last year, COVID-19 infection rates for Californians with IDD were almost half that of the general population, with 30 percent of the state’s residents contracting the virus versus 14 percent of people with IDD.

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Currently there are no bills in Congress for us to support or oppose.

(Currently, there is no congress, per se)

Please watch this space for information as bills affecting people with I/DD and autism are introduced.

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