Albany Times Union, August 9, 2022

Saratoga Bridges’ day habilitation program in Clifton Park is latest to face shutdown amid a staffing crisis plaguing facilities that serve those with disabilities

Brendan J. Lyons

Aug. 8, 2022 Updated: Aug. 8, 2022 8:04 p.m

CLIFTON PARK — A staffing crisis that is crippling care programs for individuals with disabilities is forcing Saratoga County’s largest nonprofit human services agency to temporarily “pause” a day habilitation program in Clifton Park.

For some of the roughly two dozen families affected, the looming decisions include whether a parent might have to quit their job to care for their loved one during the day.

“At that particular site we felt that it’s not safe to do the day program with as many individuals, with the staffing shortages that we have,” said Jane Mastaitis, chief executive officer at Saratoga Bridges, one of 36 chapters of The Arc New York, the state’s largest nonprofit organization serving people with intellectual and developmental disabilities. “We’re just so short of staff; it’s just a decision that we made as team … for the safety of the individuals.”

Mastaitis said the temporary closure is scheduled to begin Aug. 15 at the facility on Clifton Park Center Road.

It is among dozens of closures of similar residential and day habilitation programs by state-run and non-profit agencies that have been unfolding across the state. Although New York increased the wages it pays workers in state-run facilities, the private sector — especially non-profit organizations — account for about 80 percent of the services provided to intellectually and developmentally disabled individuals. But the average wage for care workers in that sector is still under $15 an hour.

Joseph Pisacane, 61, a Waterford resident who is the sole caretaker of his 31-year-old son, said the temporary closure of the Clifton Park program is likely to force him to quit his job. During the pandemic, he said, he had to leave his job for more than a year because of the lack of services available for his son, a situation exacerbated by COVID-19 shutdowns.

“My son has a seizure disorder from birth and he’s totally disabled,” Pisacane said. “He is mobile, but for how much longer I don’t know. He wears a diaper and doesn’t communicate. I’m a single dad trying to do this on my own for the last 13 years. I’m really struggling and I don’t know what to do anymore.”

He’s not alone: Families across the state — and nationwide — are facing similar crises as group homes and facilities that serve disabled individuals are facing closure due to an unprecedented staffing crisis brought on, in part, by low wages and other factors impacting the industry. 

Laura Styczynski, whose 30-year-old son attends Saratoga Bridge’s day habilitation program, said she also may be forced to take a leave from her job at a school in order to care for him during the closure.

“They said that it’s for an indefinite period of time, and they said when day-hab reopens it may not reopen for us here in Clifton Park,” Styczynski said. “I work in a school, so come Labor Day I need the situation to be resolved so that I can go back to work to carry some of the benefits for our family as well as the income needed to help provide for all three of our children. … I can’t go to my job, which means the school system that I work for is going to be short-handed. It’s a very stressful situation for families.”

Styczynski said she does not fault the workers whom she said “break their backs every day” but in many instances could receive more pay working for a chain restaurant.

“They need to pay the staff more,” she said. “These people work so hard and are so dedicated to these individuals that it’s just a shame for everyone that they’re struggling this way.”

Kate Geurin, a spokeswoman for The Arc New York, said that government-funded one-time bonuses distributed to employees this year helped retain workers in the private sector but had little impact on recruitment.

“We’ve found that what’s much more effective is increases in base pay, and also the retention bonuses are ending so we have some concerns that we’ll actually lose staff once that’s played out,” Geurin said. “It was a real stopgap solution. So we did get COLA (cost-of-living-adjustment) funding and some providers are able to increase wages using those funds, but it’s really still not enough to remain competitive.”

Geurin added the organization is “very, very cognizant of the problems that it causes for families” when services are suspended, “but we need to know that we’re bringing people into a safe environment.”

Mastaitis said Saratoga Bridges — which also operates day habilitation programs in Malta, Wilton and Saratoga Springs that will remain open — used to compete for workers with other non-profits that provide similar services. Now, she said, they are competing with all employers — including fast-food restaurants and retail stores vying to hire the workers who are willing to fill vacant jobs.

“In fact, prior to COVID we served over 400 people in our day program, and right now are serving about half of that because of staffing,” Mastaitis said. “I don’t know where the workforce went. … It’s hitting families hard. … It’s very, very difficult to make a decision like this. Everybody is out of staff.”

Saratoga Bridges is seeking alternative programs for the families who will be effected by the closure of the Clifton Park day program, though it’s not clear how many options there are; it may require some to travel longer distances.

Rural areas of the state, especially in the Finger Lakes region, are among the regions hard-hit by the “suspensions” of residential services that have resulted in many developmentally disabled people being forced to move into new group homes or care facilities, sometimes long distances away from their families.

In January, Hochul’s administration announced it had applied for $2.2 billion in federal aid to strengthen the home care workforce, including implementing a “data-driven” strategy for recruiting workers for the state Office for People with Developmental Disabilities.

According to the Public Employees Federation, OPWDD’s civil service workforce declined by more than 10,000 workers — to just under 20,000 — between 1990 and last year.

OPWDD officials said they have been implementing salary increases since March to improve recruitment and retention. The first phase of that, which increased pay to more than $20 per hour for the state workforce’s “direct support assistants,” resulted in more than 4,000 workers receiving an increase. They are also increasing salaries for higher-level clinical workers as well as nurses.

The agency said it has needed to implement “emergency measures to ensure the safety of people living in a small number of group homes that are unable to retain or recruit sufficient staffing levels.”

In the past three years, 130 OPWDD-operated group homes across the state were “temporarily suspended” due to staff vacancies, the agency said. That does not include facilities operated by non-profit agencies, which provide most of the state’s care.

As of the end of March, OPWDD was seeking emergency residential placement for 1,059 people who were either “homeless or in imminent danger of being homeless.” There were 2,270 people seeking residential placement in a “substantial need category, which includes people at an increasing risk of having no permanent place to live, such as someone whose family or other caregivers are becoming increasingly unable to continue to provide care for the person.”

An additional 2,159 people were seeking residential placement but were not considered to be in “emergency” or “substantial need” situations.

An official with the New York Disability Advocates recently told a state Senate committee that there had been a roughly 25 percent vacancy rate for direct care workers, which was about 75 percent higher than before the

Written By

Brendan J. Lyons

5

Rural areas are being especially hard-hit by the “suspensions” of services in facilities that care for developmentally disabled individuals

ALBANY — A staffing crisis at residential facilities operated by the state Office for People with Developmental Disabilities is continuing to drive closures of the facilities, with labor groups and families who rely on the group homes worried there is not enough being done to recruit new workers.

Rural areas of the state, especially in the Finger Lakes region, are among the regions being hard-hit by the “suspensions” of residential services that have resulted in many developmentally disabled people being forced to move into new group homes or care facilities, sometimes long distances away from their families.

“They’re not doing a good enough job trying to recruit new people in a very rural area,” said Karen Duboy, a Wyoming County resident whose 30-year-old son Matthew, who has Down Syndrome, was uprooted in December from the group home where he had lived comfortably for years. “I just think the state has really let a lot of people down with continuing the services that we’ve all looked for.”

Duboy’s son was among a group of dozens of disabled persons who were initially going to be moved to a day center in the Finger Lakes region last November where cots were being set up in a gymnasium. That plan was quickly abandoned that month after the Times Union contacted Gov. Kathy Hochul’s office about it.

Duboy said that after the state closed her son’s longtime residence, where he had lived with four other residents, he was among 11 residents who were moved into another home with 11 other residents, many of whom used wheelchairs.

“The whole dynamics changed for both houses. So now you have 22 people that have been really disrupted,” she said. “The staff did very well helping people to adjust. … At the time Matthew was there, I feel that he got cared for — but the quality may not have been what it was in a smaller house. Again, it’s no disrespect to the staff: They did the best they could with what they had.”

In January, Hochul’s administration announced it had applied for $2.2 billion in federal aid to strengthen the home care workforce, including implementing a “data-driven” strategy for recruiting OPWDD workers.

According to the Public Employees Federation, OPWDD’s civil service workforce declined by more than 10,000 workers — to just under 20,000 — between 1990 and last year.

Earlier this month, Wayne Spence, PEF’s president, delivered remarks at one of multiple public forums the agency is conducting across the state to get input on its new five-year plan that’s schedule to go into effect next year.

“It is regrettable that the agency purposefully excluded our members and our union from active participation in the development of this draft strategic plan,” Spence said at the forum in Rochester on July 18. “We also remain concerned that this strategic plan continues to advance the flawed policy approach that private providers can provide appropriate, long-term care for the most profoundly disabled at lower cost and with the same quality of care provided by the state’s residential and other programs.”

In response to a series of questions, OPWDD issued a statement saying that “like most human services organizations across the country” it is facing “a workforce shortage of crisis proportions worsened by the COVID pandemic.”

The agency said it has needed to implement “emergency measures to ensure the safety of people living in a small number of group homes that are unable to retain or recruit sufficient staffing levels.”

In the past three years, 130 OPWDD-operated group homes across the state were “temporarily suspended” due to staff vacancies, the agency said.

Tough conditions

Statewide, OPWDD said it has nearly 3,000 full-time staff vacancies from its 2023 budgeted allocation. The agency said that in “rare circumstances” it has needed to mandate overtime that results in staffers working more than 30 consecutive hours to maintain minimum staffing requirements for those they serve. 

“The agency works to provide staffing relief as quickly as possible and will work with the employee to allow for periods of rest/meals,” the agency said.   

Three years ago, there were more than 7,600 people being cared for in group homes and other 24-hour care facilities run by OPWDD. But staffing shortages that began before the pandemic have decimated that workforce, which state officials have acknowledged are underpaid for often challenging working conditions.

But waiting lists continue to remain stacked with thousands of individuals whose families or caregivers are seeking residential care.

As of the end of March, OPWDD was seeking emergency residential placement for 1,059 people who were either “homeless or in imminent danger of being homeless.” There were 2,270 people seeking residential placement in a “substantial need category, which includes people at an increasing risk of having no permanent place to live, such as someone whose family or other caregivers are becoming increasingly unable to continue to provide care for the person.”

An additional 2,159 people were seeking residential placement but were not considered to be in “emergency” or “substantial need” situations.

Group home workers interviewed for this story said the mandatory overtime has contributed to additional departures — retirements and resignations — and it’s not unusual for some employees to be required to work shifts of more than 30 hours.

“The continued outsourcing, consolidation and closure of programs and services operated by (various state agencies) — coupled with the reduction of staff and the physical beds dedicated to help the mentally ill, the developmentally disabled and those who suffer from co-occurring disorders — are disproportionately harming low-income, uninsured, underinsured, undocumented and severely handicapped New Yorkers who suffer from acute mental illness, developmental disabilities or addiction, as well as those who suffer from co-occurring disorders,” Spence said on July 18. 

Duboy, whose son moved into a home earlier this year run by the ARC that serves Geneseo, Livingston, Orleans and Wyoming counties, questioned the five-year plan being proposed that she said “looks good on paper” but has not resulted in a more immediate effort to recruit workers.

“The staff that are there do really enjoy helping our loved ones on daily skills and working with them, but the future of that type of commitment is not there,” she said. “The staff feel like they’re under-appreciated. It’s just really hard. I think (the state) lost touch with families. I want Matthew to be cared for to the best of his loving care when I’m gone.”

Pay raises

PEF officials contend the state doesn’t appear to have a plan to quickly address the staffing shortages and ongoing closures despite providing supplemental benefits and bonuses for the private not-for-profit agencies that are handling many of the residents.

Randi DiAntonio, PEF’s vice president, told a state Senate panel last year that the staffing shortages were exacerbated by the pandemic — when many people quit their jobs — and also by years of handing over services for those with intellectual and developmental disabilities to private providers in an effort to cut costs.

“The state of New York has embarked on a long-term effort to reduce funding and staffing at all of its agencies. OPWDD has seen some of the most dramatic reductions in staffing overtime,” DiAntonio said in a written statement provided to the panel, noting that the agency had its workforce cut by 16 percent — nearly 3,800 employees — between 2011, when Gov. Andrew M. Cuomo began his first term, and 2020.

“This reduction in staff is directly attributable to the imposition of ‘bare-bones’ budgeting at all of the state agencies that has been in place for years so the state can remain under the arbitrary 2 percent annual state spending cap,” she added. “This budgeting approach left the state ill-prepared to address the (COVID-19) pandemic and has hampered the ability of the state to meet its ethical obligations to maintain the continuity of quality and accessible services for many at-risk New Yorkers, including individuals with developmental disabilities.”

DiAntonio, under questioning from the panel, had said nurses and other health care professionals were “leaving in droves,” and low morale and burnout in the industry were at all-time highs.

“The number of people with disabilities is not shrinking … and the needs for people with children with autism are exponentially larger,” she said. “The waiting list for services has not gone down. … We’ve closed almost 5,000 beds.”

An official with the New York Disability Advocates told that same Senate committee that there had been a roughly 25 percent vacancy rate for direct care workers, which was about 75 percent higher than before the pandemic.

Among the measures the state has undertaken to try and stem the staff shortages: allocating bonuses of up to $3,000 “for both state and nonprofit health care and mental hygiene staff, which are in the process of being effectuated.”

In addition to paying out more than $1 billion in bonuses to workers employed by nonprofit providers — money from the American Rescue Plan Act — the agency also has added a 5.4 percent “cost-of-living adjustment for non-profit provider agencies to address inflation and other fiscal pressures, such as the need to enhance direct care, support and clinical staff compensation.”

Additionally, the most recent state budget allows OPWDD to pay increased overtime rates of 2.5 times the rate of base pay.

Written By

Brendan J. Lyons

Brendan J. Lyons is a managing editor for the Times Union overseeing the Capitol Bureau and investigations. Lyons joined the Times Union in 1998 as a crime reporter before being assigned to the investigations team. He became editor of the investigations team in 2013 and began overseeing the Capitol Bureau in 2017. You can reach him at blyons@timesunion.com or 518-454-5547.

JULY 19, 2022

Contact:   Press Office, (202) 401-1576, press@ed.gov

• More ResourcesEspañol (Spanish)

New guidance released today from the Department of Education’s Office for Civil Rights (OCR) and Office of Special Education and Rehabilitative Services (OSERS) helps public elementary and secondary schools fulfill their responsibilities to meet the needs of students with disabilities and avoid the discriminatory use of student discipline.

These newly released resources are the most comprehensive guidance on the civil rights of students with disabilities concerning student discipline and build on the Department’s continued efforts to support students and schools through pandemic recovery.

“All students deserve to have their rights protected, and schools deserve greater clarity on how they can avoid the discriminatory use of discipline, ” said U.S. Secretary of Education Miguel Cardona. “Too often, students with disabilities face harsh and exclusionary disciplinary action at school. The guidance we’re releasing today will help ensure that students with disabilities are treated fairly and have access to supports and services to meet their needs – including their disability-based behavior. We also expect that districts utilize the federal American Rescue Plan dollars to build capacity, provide professional learning opportunities for educators and school leaders, and hire additional staff. These resources will also help schools live up to their legal obligations, support an equitable recovery for all our students, and make sure that students with disabilities get the behavioral supports and special education services they need to thrive. “

The new resources reflect the concern, particularly in light of the prevalence of student mental health issues associated with the pandemic, that some students with disabilities are not receiving the supports and services necessary to address their educational needs, including their disability-based behavior.

The guidance makes clear that schools do not need to choose between complying with Section 504 of the Rehabilitation Act of 1973 (Section 504) and the Individuals with Disabilities Education Act and keeping their school community – including students and staff – safe.

The new resources include:

• Supporting Students with Disabilities and Avoiding the Discriminatory Use of Student Discipline under Section 504 of the Rehabilitation Act of 1973 and an accompanying Fact Sheet.
• Questions and Answers Addressing the Needs of Children with Disabilities and the Individuals with Disabilities Education Act’s (IDEA’s) Discipline Provisions.
• Positive, Proactive Approaches to Supporting the Needs of Children with Disabilities: A Guide for Stakeholders. And,
• A letter from Secretary Cardona to our nation’s educators, school leaders, parents, and students about the importance of supporting the needs of students with disabilities.

In developing today’s guidance and resources, the Department drew from experience with enforcing and administering federal laws relating to students with disabilities, including Section 504 and the IDEA. The Department also considered information shared by members of the public in response to the June 2021 Request for Information Regarding the Nondiscriminatory Administration of School Discipline.

Section 504 prohibits recipients of federal financial assistance from discriminating based on disability, and the IDEA guarantees that children with disabilities have available to them a free appropriate public education (FAPE). FAPE emphasizes special education and related services designed to the needs of children with disabilities and prepare them for further education and employment services and independent living.Supporting Students and Avoiding the Discriminatory Use of Discipline under Section 504

Supporting Students with Disabilities and Avoiding the Discriminatory Use of Student Discipline under Section 504 of the Rehabilitation Act of 1973 explains that Section 504 requires schools to provide behavioral supports and services to students with disabilities who need them in order to receive a FAPE.

“Today’s crucial guidance outlines how schools can effectively support and respond to behavior that is based on a student’s disability and could lead to student discipline, in addition to explaining schools’ civil rights responsibilities related to disability when administering student discipline” said Assistant Secretary for Civil Rights Catherine E. Lhamon. “We will continue to vigorously enforce federal civil rights laws to ensure that all students have equal access to educational opportunities. “

The new guidance makes clear that providing the individualized services and supports required by Section 504 can help prevent or reduce disability-based behaviors that might otherwise lead to student discipline. Additionally, the guidance:

• Outlines how Section 504’s requirements to provide a FAPE apply to long-term disciplinary sanctions, such as out-of-school suspensions and expulsions.
• Explains Section 504’s general nondiscrimination requirements, in the context of discipline, which applies to school staff and to the conduct of everyone with whom the school has a contractual or other arrangement, such as security staff and school police.
• Makes clear that Section 504 requires schools to provide reasonable modifications to policies, practices, and procedures when necessary to avoid discrimination.

Section 504 does not prohibit a school from responding to emergency circumstances, such as contacting law enforcement or crisis intervention specialists, or from taking appropriate, nondiscriminatory steps to maintain safety and support students in learning how to be accountable for the impact of their actions on others.Supporting the Needs of Children with Disabilities and IDEA’s Discipline Provisions

Questions and Answers Addressing the Needs of Children with Disabilities and the Individuals with Disabilities Education Act’s (IDEA’s) Discipline Provisions and Positive, Proactive Approaches to Supporting the Needs of Children with Disabilities: A Guide for Stakeholders expand upon the 2016 Dear Colleague Letter that included data demonstrating that many children with disabilities, particularly Black children with disabilities, were subjected to high rates of disciplinary removals (such as suspensions and expulsions).

Today’s resources underscore that children can experience academic success with an appropriately developed and effectively implemented individualized education program (IEP). IDEA includes specific provisions to address situations in which the behavior of a child with a disability impedes the child’s learning, the learning of others, or violates a school’s code of student conduct. Importantly, as part of the obligation to provide FAPE, in the case of a child whose behavior impedes the child’s learning or that of others, the IEP Team must consider – and include in the IEP – the use of positive behavioral interventions and supports, and other strategies, to address that behavior.

“These resources are intended to assist state educational agencies (SEAs) with supporting local educational agencies (LEAs) and schools in addressing the needs of children with disabilities and equitably and appropriately implementing IDEA, ” said Deputy Assistant Secretary for the Office of Special Education and Rehabilitative Services Katy Neas. “These documents can assist students and families in understanding their rights under IDEA and provide SEAs, LEAs, and educators resources to fulfill their obligations to appropriately meet the needs of children with disabilities. Together, we can reduce the use of exclusionary discipline for children with disabilities and ensure every child has access to an educational environment that is nondiscriminatory, supportive, positive, and safe for all. “

Questions and Answers Addressing the Needs of Children with Disabilities and the Individuals with Disabilities Education Act’s (IDEA’s) Discipline Provisions discusses how certain school actions, such as informal removals and the use of threat assessments, may result in the denial of FAPE to children with disabilities.

Positive, Proactive Approaches to Supporting the Needs of Children with Disabilities: A Guide for Stakeholders offers evidence-based strategies that early childhood programs, schools, and local educational agencies (LEAs) can use in place of exclusionary discipline or other harmful practices such as restraint or seclusion.

More information about the Department’s efforts to assist schools in fostering nondiscriminatory and safe learning environments is available here.

OPWDD Partners with Georgetown University to Enhance Diversity, Equity and Inclusion

Governor Kathy Hochul announced that the New York State Office for People With Developmental Disabilities has entered a three-year, $10 million partnership with Georgetown University’s National Center for Cultural Competence to advance the policies and practices of diversity, equity, inclusion and cultural and linguistic competence into all components of the OPWDD system of supports and services for people with developmental disabilities. 

“As we work hard to promote diversity, equity, and inclusion in our communities, I am excited to join this important partnership with Georgetown University,” Governor Hochul said. “This three-year undertaking will help break down barriers that often prevent New Yorkers with developmental disabilities, their families and the people who support them from receiving the services they need to thrive.”

OPWDD Commissioner Kerri E. Neifeld said, “Georgetown University’s NCCC has distinguished itself as a leader in the DEI space. With this partnership, OPWDD will be able to draw upon their expertise as we learn from our stakeholders and improve our awareness of diversity, equity, inclusion and cultural competency issues within our current system.” Read more about the partnership.

Letter: State funding process outdated for preschool providers

To the editor

July 5, 2022

New York state funds preschool special education differently from school-age programs. This year, the governor is trying to make up for lost time by providing an 11 percent increase; however, the increase does not fix the real problem: the methodology used to create the rate preschool programs receive.

Stakeholders have advocated for a methodology that supports the needs of students, staffing and actual costs. The state Department of Education has recommended the elimination of reconciliation and advanced proposals for a new methodology. While stakeholders and the state education department are aligned and understand the needs of students with special needs, the state Division of the Budget remains the obstacle.

The current rate methodology requires programs to operate on rates that are 2 or 3 years old, and this results in programs being cash-strapped or having to borrow to meet student needs. The methodology impacts staffing, which is essential, in operating programs. Special education teachers and therapeutic staff are in high demand and preschool programs are not competitive with the public sector, which causes turnover or an inability to recruit.

More and more children are doing without special education services, and it is not for a lack of trying. Providers are willing to open new classrooms but need adequate funding and staffing.

Gov. Kathy Hochul and Budget Director Robert Mujica need to work to provide ongoing sustained equity in funding for all students with disabilities. We need competitive wages for all staff. We need administrative reforms to fully realize the governor’s $240 million investment.

Sheri L. Canfield

Albany

Owner, Spotted Zebra Learning Center/Bizzy Beez Classrooms

Message from Commissioner Neifeld Regarding COVID-19 Vaccination Reporting

Dear Colleagues and Friends,  OPWDD appreciates your ongoing partnership as we begin to adjust required COVID-19 reporting and enhanced safety protocols to reflect our current pandemic status. To that end, I want to make you aware that as of Friday, July 8, OPWDD is suspending its routine COVID-19 vaccination reporting for the people we support and staff, just as other state agencies have done. As you know, we began collecting vaccination information and providing it verbally to our stakeholders in January 2021. Information about vaccine uptake has been a valuable tool for identifying areas of need and connecting with communities to emphasize the importance of vaccination. However, now that the vaccine is widely available and the data shows only minor changes in vaccine uptake from week to week, we have identified that this time- and resource-intensive reporting has become less useful in informing our efforts and policy decisions.  I encourage you to reach out to me with any concerns you may have regarding this change at info@opwdd.ny.gov. I want to assure you that we remain mindful that COVID-19 is still a concern and that education and advocacy about receiving the vaccine continues to be an ongoing priority for this agency and its providers. OPWDD will continue to work with providers and CCOs to ensure that the people we support receive education about the benefits of vaccination and that individuals choosing to get vaccinated can do so. Sincerely,  Kerri E. Neifeld  Commissioner

May 17, 2022

It is with great sadness that the ENYDDA steering committee shares the news that one of its’ founding members, Mary Ann Allen, passed away on Monday, May 16, 2022.

She was a fierce advocate for people with disabilities and the workforce that was so critical to meeting their complex needs. Mary Ann was known across New York State as a true voice and champion for those with disabilities.

For many, Mary Ann was a dear friend and confidant. She will be missed, and we are forever grateful for all that she gave to the disabled community.

A recording of the webinar OPWDD held on self-direction on Thursday, May 12, is now available for viewing on the OPWDD website on its American Rescue Plan Act (ARPA) page for those who were unable to attend. The full webinar can be viewed here.

The presentation provided an overview of key actions that OPWDD has recently taken to enhance the self-direction model. It also outlined several future activities, including a Self-Direction program evaluation funded by the American Rescue Plan Act (ARPA).  

OPWDD is accepting written comments on the topics covered in the Self-Direction Webinar until May 27, 2022. Those who would like to submit comments should send them to: opwdd.sm.osi@opwdd.ny.gov with the subject line “Self-Direction.”

For general information on the self-direction program, visit the self-direction page on the OPWDD website.

Kimberly Hill’s priorities are tackling employment and housing for New Yorkers with disabilities after the impact of the coronavirus pandemic, according to advocates.

By Megan Mcgibney

May 9, 2022

Armed with funding provided in Gov. Kathy Hochul’s $220 billion budget, the state’s first chief disability officer will begin addressing the most pressing needs of New Yorkers with disabilities.

Advocates for people with disabilities said employment and housing issues in the aftermath of the pandemic would be the greatest priorities for Kimberly Hill, who has been serving as chief disability officer since she was appointed by Gov. Kathy Hochul in February.

A report by state Comptroller Thomas DiNapoli last year found that unemployment rates for people with disabilities in New York between April 2020 and March 2021 rose more quickly and remained higher during the outbreak than the overall unemployment rate.

“Historically, when there are economic and other types of crises, people with disabilities often are the first to be terminated, last to be rehired,” said Jan Fisher, executive director of Nonprofit Westchester. “Employment inclusion is probably one, if not the first, of the issues that the disability community, across disabilities, is concerned about.”

Todd Vaarwerk – the chief policy director of Western New York Independent Living, a nonprofit that serves the Genesee Region – said transportation to work alone can be especially challenging, since a person with disabilities who lives in a less populated area may have fewer travel options for getting to a job. He said he would like for Hill to explore these types of granular employment issues before looking into the data of which companies hire persons with disabilities.

Emily Papperman, an advocacy specialist at the Finger Lakes Independence Center in Ithaca, said Hill also should focus on helping people with disabilities clear hurdles that prevent them from landing jobs that align with their interests.

“Folks with disabilities should be able to find work that they enjoy,” she said. “(Hill) should really have conversations about what those barriers to employment are, and what folks with disabilities want to do. Instead of going, ‘OK, here’s a bunch of people with disabilities. Let’s just put them in a certain place.’ They should be needed and valued because they have skills. They wouldn’t apply for a job if they didn’t think they can do it.”

Papperman said she has had clients who are unable to focus on getting a job because they also are not in a stable living situation.

Marlene Zarfes, executive director of Westchester Residential Opportunities, which helps clients find affordable and accessible housing, said a lack of inventory and discrimination were among the challenges people with disabilities faced. For example, some housing providers won’t allow pets, even for tenants relying on emotional support animals, provide parking spots close to residential buildings or incorporate structural accommodations such as wider doorways for wheelchairs or lower kitchen counters

“Often people with disabilities are much more likely to be lower income,” Zarfes said. “They may be living on (Supplemental Security Income). They’ve got less money to look for something and, unfortunately, too many housing providers are saying, ‘We’re not going to take your SSI as payment or we’re not going to take your housing choice voucher as payment.’”

Discrimination also happens to those needing an assisted living situation at residential developments, said Donna Long, co-chair of the Staten Island Disability Development Council’s advocacy committee. Her 44-year-old daughter is on the autism spectrum, and as Long and her husband age, they are finding it difficult to look after her. But finding a community residence or even getting one built has been a bigger hurdle than expected, Long said. She recalled recently how advocacy committee members attended a meeting at a local civic association about building such a home. Attendees strongly opposed the idea by wondering aloud who would be on staff, whether there would be parking issues and made excuses for why people with developmental disabilities shouldn’t live in the neighborhood, according to Long.

“For agencies to have to go through that,” she said, “it’s like asking for permission. When we all move into a home, we don’t get that interrogation.”

Most advocates also noted that Hill should prioritize the enforcement of the Americans with Disabilities Act. Vaarwerk, however, warned that the needs of people with disabilities vary from region to region.

“This is not one size fits all,” he said. “The more rural you go, the less services there are. Hill needs a whole state solution: urban, suburban and rural.”

Hochul’s decision to appoint Hill filled the void advocates complained was left after the state Office of the Advocate for the Disabled folded in 2013. Aside from advocacy, that office was charged with implementing laws that prevented discrimination against people with disabilities. Its work was absorbed by the state Commission on Quality of Care and Advocacy for Persons with Disabilities and later the Justice Center for the Protection of People with Special Needs, now known as The Justice Center.

However, advocates still lobbied for the creation of a single state entity to centralize services that covered the needs of New Yorkers with disabilities and offered them protections. “Many advances in the services available for people with disabilities,” have been made over the years, Hochul’s office said, but agreed that a chief disability officer was needed to help navigate the complexities of serving people with disabilities.

“It is critical to prioritize the needs of the entire disability community, which includes individuals with physical, sensory, mobility, intellectual, developmental and psychiatric disabilities, with a Chief Disability Officer who leads a well-resourced office,” Hochul’s office said in a statement.

Hill told City & State she would deliver on the governor’s charge and work closely with New York’s community of people with disabilities. “I want to convey to everyone that it is the intention of this office to always consult with people with disabilities as we strive towards our goal of making New York a more integrated, inclusive and accessible place to live – and to always embrace the ‘nothing about us without us’ mentality,” she said in an emailed statement.

On housing, she said changes are already being made: “The budget’s comprehensive $25 billion housing plan tackles systemic inequities by creating and preserving 100,000 affordable homes, including 10,000 homes with support services for vulnerable populations.”

As for employment, Hill said, “We are going to take a multilayered approach and create a coalition with all of the state agencies who assist in the employment of people with disabilities to make the hiring of people with disabilities in New York state the norm, rather than the exception.”

Previously, Hill was the principal analyst for the Assembly People with Disabilities Committee. In that role, she worked on the passage of the Most Integrated Setting Coordinating Council, the Nursing Home Transition and Diversion Medicaid Waiver, and the state’s Medicaid Buy-In Program.

She also previously served as director of the Assembly Task Force on People with Disabilities, which focused on people with sensory and physical disabilities. She began her career as a writer for the Assembly Communication and Information Services Department. A resident of Latham in the Capital Region, Hill earned a bachelor’s degree in science while attending what was then known as Utica College.

So far, advocates have welcomed her appointment, but they said they had high expectations.

“This is a new way for the state at large to recognize disability as an opportunity for people, and I believe Chief Disability Officer Kimberly Hill’s role is to ensure there are employment opportunities for people with disabilities, as well as recognition of the capability of a person with disability to function and be independent,” said Tibisay Guzmán, executive director and CEO of The Arc Westchester, which works with clients with intellectual and developmental disabilities.

Others expressed optimism that with Hill, greater advocacy will come for the state’s community of people with disabilities.

“There was no voice or a coordinated voice for a bunch of years,” Vaarwerk said. “(But) I am excited that this (position) will resolve some of the problems.”

Megan McGibney is a freelance reporter living in Brooklyn. Her reporting focuses on politics, education, reproductive health and psychology.

.