AHRC New York City has fought for the civil rights of people with intellectual and developmental disabilities and their families for over 70 years.

The fight continues and You Can Help.

The resources below will help you to understand today’s policy initiatives, and provide resources you can use to help make a better world for people with disabilities and their families. Included below are our advocacy initiatives at the local, state, and federal levels.

2023 – 2024 AHRC New York City Advocacy Priorities

The Issue

With rising costs of inflation, coupled with the decades-long workforce crisis and a historic lack of funding, the operational costs for non-profit I/DD provider agencies have drastically outpaced the funding this sector needs to care for over 130,000 New Yorkers with I/DD.

  • 85% of individuals with I/DD in NY are supported by non-profit providers
  • $100.5M is the annual cost of high staff turnover rates for agencies
  • 19,788 vacant direct care positions need to be filled by the non-profit sector

WORKFORCE SUSTAINABILITY

DIRECT SUPPORT PROFESSIONALS

Permanent investment in Direct Support Professionals’ (DSP) salaries is essential to recruit and retain staff for the future viability of the field. As highly skilled professionals dedicated to the essential care of individuals with I/DD, DSPs take on numerous critical responsibilities to uplift the safety, productivity, and well-being of the entire I/DD community.

DSPs are responsible for providing important practical & administrative support such as first aid & CPR, administering medication, meal preparation or transport facilitation, as well as, attending to the comprehensive social, emotional, & psychological needs of those they care for. Whether it’s teaching personal care skills and money management or directing crisis de-escalation, DSPs are required to be well-trained, skilled, and constantly prepared for all the essential life-support services their profession demands.

Through their fundamental support & services, DSPs are integral pillars of support for New York’s I/DD community and are crucial in ensuring that over 130,000 New Yorkers with I/DD can live their highest quality of life.

DIRECT SUPPORT WAGE ENHANCEMENT (DSWE)

NYDA is recommending the establishment of a new Direct Support Wage Enhancement (DSWE) as part of the SFY 2024 New York State budget. Through the proposed DSWE, provider agencies would receive an annual funding allocation of $4,000 per eligible employee to be used for the purpose of enhancing the hourly rate of pay for all staff that have direct care/support responsibilities for individuals with I/DD.

The proposed $4,000 increase equates to approximately $2.19/hour for a full time employee. The DSWE is also reflective of the 13% increase provided to DSPs employed by OPWDD in the SFY 2023 Budget. Furthermore, OPWDD is proposing an additional $4,000 – 6,000 increase for OPWDD DSPs as part of the SFY 2024 Budget.

Therefore, the inclusion of the DSWE is critical to provide an equitable increase to employees who are providing the same services to the majority of people with I/DD in New York State.

INCLUDE: ESTABLISHM ENT OF A DIRECT SUPPORT WAGE ENHANCEMENT AS PART OF SFY 2024 BUDGET

SYSTEM SUSTAINABILITY

COLA – 8.5% FOR SFY 2024

Due to the significant inflationary growth that has occurred over the past year, not-for-profit provider agencies’ operating costs have increased significantly necessitating an 8.5% COLA in the Enacted SFY 2024 Budget. The proposed 2.5% increase in the Executive Budget, unfortunately, does not provide the necessary resources to continue to invest in the vital workforce needed to provide high-quality life-supporting services and will erase the progress that has been made over the past year.

Significant cost increases related to mandated fringe benefits, repairs and maintenance, utilities, food, supplies, transportation, and insurance over the past 12 months have resulted in significant financial pressure on agencies. Additionally, since the I/DD provider agencies are solely funded by Medicaid, agencies are unable to increase reimbursement for services to compensate for increased costs of operations.

MODIFY: HEALTH AND MENTAL HYGIENE PART DD TO INCLUDE 8 . 5 % COLA

The Issue

70,000 families depend on these services
1,834 rendering providers have left the field since 2019
65 EI agencies have closed

The Early Intervention (EI) program, which is Part C of the federal Individuals with Disabilities Education Act (IDEA), provides critical services for children with disabilities and developmental delays from birth to three years of age, and their families. Research has shown that EI services are cost-effective and successful in improving long-term prognoses and minimizing the need for life-long services.

An investment in EI is clearly both fiscally and socially prudent.

The financial needs of the Early Intervention service system have been neglected over the past three decades, leading to a capacity crisis that threatens the viability and availability of EI services. Community-based EI provider reimbursement rates are similar to when the program began in 1994. This pattern of inadequate compensation has led to a critical shortage of EI providers, which has resulted in delays in service delivery across the state.

New York State is failing to meet its legal obligation to ensure access to timely evaluations and services for infants and toddlers with developmental delays.

NYS DOH and its Early Intervention Coordinating Council (EICC) have recognized the dire need to increase reimbursement rates. The NYS EICC passed a resolution calling for an 11% rate increase in the Executive Budget Proposal- $0 was included.

Additional Points:

  • During the pandemic, almost 6000 fewer children received EI
    • These children now need more supports as they enter preschool than they would have had they received EI services.
    • The state saved thousands of dollars that were not reinvested into the program or into preschool special education services.
  • The Covered Lives Legislation that was signed into law in 2021, saved the state $28 million by requiring insurance companies to cover their fair share of EI costs – these savings were not reinvested into the EI program.
  • Center-based EI programs provide critical services to families and children living in traditionally underserved communities across New York Center-based EI programs have been decimated from years of disinvestment and many have already closed.

During the pandemic center-based EI programs were the hardest hit and suffered significant fiscal losses. They did not receive any Federal or State assistance. The rate increase of 11% is vital to ensuring that these services continue to be available as part of the continuum of EI services. This is a matter of equity and justice for the families and children who depend on these services.

The Issue

For more than forty years, New York State has counted on specialty Article 28, FQHC and Article 16 clinics, supporting patients with significant disabilities, to fill an essential gap in the service delivery system and prevent expensive and unnecessary services delivered in emergency room and acute care settings.

These clinics accommodate the unique needs of people with I/DD by providing:

  • extra time for patients to feel comfortable
  • techniques to minimize behaviors
  • extra time to share information
  • customized communication techniques
  • desensitizing techniques
  • other accommodations

Current rates do not cover actual costs associated with this specialty care and these accommodations are not available outside of our clinics.

Our 2022 survey of clinic operations shows a 20-35% loss on operations for clinics across the State.

Clinic closures result in operatory procedures for issues that could easily have been avoided with more timely primary care and ER visits for untreated conditions often generate MRI and other expensive diagnostic tests since the patient is unable to communicate and has no previous relationship with ER physicians.

In March of 2018, NYS DOH and OPWDD jointly established the Clinic/APG Base Rates Workgroup to address the concern that Article 16 and 28 clinics operated by OPWDD nonprofit agencies would cease to exist due to operating shortfalls. The workgroup recommended increasing the APG add-on for patients assigned Code 95 (I/DD) or Code 81 (TBI) by 10%. Since 2018, costs have risen and losses have compounded, so a 10% increase is no longer sufficient to preserve these services.

The Issue

The telehealth flexibilities allowed by Medicare and Medicaid during the PHE enabled clinics to use telehealth technology in the most efficient and effective manner for people with I/DD.

With the end of the PHE in the near future, many of the telehealth flexibilities will be continued, but some will not. Current law stipulates that when the PHE ends, when services are provided via telehealth and both the clinician and patient are located outside the Article 28 clinic, the facility fee will be deducted from the APG payment rate.

Clinic buildings cannot close, so even when both the clinician and patient are offsite, the facility costs are still incurred:

rent or mortgage
gas and electric
salaries
all other overhead

No costs are eliminated simply because a service is provided via telehealth. In fact, telehealth creates additional expenses for software, hardware, and internet services.

There’s also an access issue, particularly for people with I/DD: it is very difficult for our Article 28 clinics to hire clinicians – particularly specialists, and remote work has made it possible to recruit specialists to meet our patients’ needs. If specialists are required to come to the clinic site, people with I/DD will have reduced access to specialists. If patients with I/DD are required to come into the clinic for a telehealth visit with a clinician, the benefit of telehealth would be negated.

Telehealth provides better access and quality of care for people with I/DD.

Advocacy in Action

New York State Assemblymember, Rebecca Seawright, Chair of the Assembly Committee on People with Disabilities, hosted a press conference on the crisis in the workforce serving New Yorkers with intellectual & developmental disabilities. Parent advocates, Germaine Laviscount Scott and Meri Krasner shared their stories, advocating for higher wages for the dedicated staff who support their families.

For further information contact: webmaster@ahrcnyc.org

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CONTACT US ABOUT POLICY & ADVOCACY

AHRC New York City’s Video Series,
Stories from the Frontline

Recognizing the need to keep our advocacy momentum moving forward by re-familiarizing our legislators and government officials with the issues we currently face, AHRC New York City hosted Stories from the Frontline, a series of virtual roundtable discussions throughout the five boroughs, extending invitations to our statewide elected officials to participate in the discussion. Listen to these compelling stories.

Stories from the Frontline: Staten Island

Timestamps:
00:00 Marco Damiani: Introduction
05:40 Anne Gordon: Parent Testimony
12:37 Kristin Thatcher: Self-Advocate Testimony
20:30 Laura J. Kennedy: Parent Testimony
24:53 Michael Iteme: Direct Support Professional Testimony
35:32 Raymond Ferrigno: Parent Testimony
39:52 Michael Weinberg: Parent Testimony
47:58 Marco Damiani: Conclusion
49:48 Final Thoughts and Comments

Stories from the Frontline: Queens

Timestamps:
00:00 Marco Damiani: Introduction
04:47 Cindy Leahy: Parent Testimony
09:17 Therese Williams-Wiggins: Direct Support Professional Testimony
11:51 Jeanette Reyes: Parent Testimony
15:54 Thomas Kernahan: Self-Advocate Testimony
19:29 Marc Ramos: Direct Support Professional Testimony
24:54 Edward Leahy: Parent Testimony
28:37 Marco Damiani: Conclusion
29:43 Final Thoughts and Comments

Stories from the Frontline: Bronx

Timestamps:
00:00 Marco Damiani: Introduction
06:41 Tina Veale: Parent Testimony
12:51 Venus Santiago: Direct Support Professional Testimony
17:02 Majolyn Nunez: Self-Advocate Testimony
19:09 Nicole Rattless: Sibling Testimony
23:13 Edie Weber: Parent Testimony
28:27 Marco Damiani: Conclusion
30:09 Final Thoughts and Comments

Stories from the Frontline: Manhattan

Timestamps:
00:00 Marco Damiani: Introduction
04:21 Meri Krassner: Parent Testimony
08:35 Shaquille Adams: Direct Support Professional Testimony
14:26 Mary McGuire-Weafer: Parent Testimony
21:06 Germaine Laviscount-Scott: Parent Testimony
28:36 Andreina Martinez: Self-Advocate Testimony
30:22 Sharyn van Reepinghen: Parent Testimony
37:56 Marco Damiani: Conclusion
41:29 Final Thoughts and Comments

2023 – 2024 The Arc New York Advocacy Priorities

The Arc of New York advocates at the state and federal level for public policy that supports people with intellectual and developmental disabilities and their families. As part of the #bFair2DirectCare Coalition, The Arc New York has prioritized advocacy to secure adequate funding to address the ongoing workforce crisis that threatens the quality and sustainability of care and support for New Yorkers with I/DD.

We also advocate on various issues including increasing salaries for direct support professionals, protecting Medicaid, and increasing residential development.

Current advocacy priorities include:

Issue:

Medicaid funding is the backbone of services to people with developmental disabilities across the nation, particularly in New York State. Medicaid comprises approximately 90 percent of the funding to The Arc New York and other developmental disabilities providers in our state. Cuts to Medicaid funding would prove devastating to the families we support and the services we provide.

Medicaid is still at risk and advocates across the nation and state are working tirelessly to keep people with intellectual and developmental disabilities (I/DD) at the forefront of policy decisions. Dedicated funding for Home and Community-Based Services (HCBS), paid leave for caregivers, and increasing the Supplemental Security Income (SSI) resource and asset limit continue to be part of our federal priorities. As the need for HCBS continues to grow, funding and increased investments are more important now than ever.

Every day, New Yorkers with I/DD rely on not-for-profit HCBS providers in the voluntary sector for programs and supports to lead a fuller, more inclusive life. A trained and dedicated workforce, along with consistent financial investments, are needed to provide these services, which are funded through the 1915c Medicaid waiver. If programs are unable to operate due to insufficient funding, these still needed services will become the responsibility of state agencies, at a higher cost to taxpayers.

For decades, New York state has not made adequate investments to sustain the programs and services people with I/DD rely on. Our field has received very few cost-of-living adjustments (COLA) to keep up with inflation and rising costs in the last decade. The annual COLA is intended to increase budgets appropriately to adjust for these factors. In the past decade, inflation rose 27%, yet our field received only a 1.2% COLA. A 5.4% COLA was committed in the

2022-23 budget, but this promised increase does not compensate for a decade of underfunding. The proposed 8.5% COLA for 2023-24 is derived from the NYS statute, which states the annual COLA will be calculated based on the Consumer Price Index (CPI-U) from July of the previous year. Upholding the COLA will support the increased cost of delivering quality services and sustain supports for the future.

On the federal level, the Federal Medicaid Assistance Percentage (FMAP) for New York state remains at 50%, which is the minimum for any state. This is despite New York taxpayers sending more to the federal government than it receives. In order to provide vital supports and services, HCBS must be appropriately funded via a permanent increase to the FMAP.

Simply put, it is absolutely critical that we secure adequate government funding to invest in our workforce and our programs to provide supports for the people we serve. Without this, our programs could be reduced or eliminated due to a lack of staffing, and many years of progress toward community integration, choice, and deinstitutionalization will be lost.

Call to Action: Sustain and Expand Funding Supports for People with Disabilities

The Arc New York, along with thousands of other developmental disabilities providers and advocates across the state and nation will vigilantly defend the Medicaid program from any actions in Albany and Washington that seek to reduce Medicaid funding.

We call on Congress and New York state to:

  • Increase the FMAP for New York state by 10 percentage points. This is in line with the proposal advanced through the Better Care Better Jobs Act.
  • Include the statuary COLA in the NYS enacted budget, which stands at 8.5% for FY24
  • Include additional and ongoing sustainability investments comparable to the workforce funds received through the American Rescue Plan Act (ARPA), closing the historic funding gap and preventing a fiscal cliff at the end of the funding period.
  • Raise SSI asset limits from $2,000 to $10,000 for individuals and from

$3,000 to $20,000 for married couples and indexes them to inflation moving forward.

We will tirelessly advocate for equal care for all individuals in all circumstances, settings, and situations and for increased Medicaid funding needed to appropriately support individuals with I/DD.

Issue:

Direct Support Professionals (DSPs) are essential workers who provide daily care, services, and supports to people with intellectual and developmental disabilities (I/DD) 24 hours a day, 7 days a week. Caring for people with complex needs is a rewarding yet challenging job, which requires ongoing training, high-level of responsibility, and skill.

This workforce has shown exemplary strength and fortitude throughout the COVID-19 pandemic crisis and continues to demonstrate its commitment to the people they support. These are not just jobs; they are careers and must be treated as such.

Nonprofit provider agencies funded by the Office for People with Developmental Disabilities (OPWDD) employ nearly 100,000 DSPs and deliver 85 percent of the needed services to approximately 140,000 people with I/DD in New York State. Almost all funding for these agencies comes from the government.

Statewide reimbursement for voluntary sector DSP salaries has increased only very modestly over the past decade, but still puts starting wages at or barely over minimum wage. By contrast, DSPs in state-operated programs receive consistent step increases year after year, with the current wage 50% higher than the voluntary sector. Many of our most knowledgeable DSPs are being lost to higher-paying entry-level job sectors, which continue to increase their hourly wages. Their contributions, ingenuity, and dedication are immeasurable. We cannot afford to lose their skills and insight. However, the federal government and New York state struggle to acknowledge their contributions.

Without adequate funding, I/DD providers cannot offer competitive wages to recruit and retain the skilled direct support staff that provide the foundation of care for New Yorkers with I/DD. The existing workforce crisis escalated dramatically in the wake of the COVID-19 pandemic. Without immediate action, this crisis will continue to force service reductions, program closures, and loss of supports for people with I/DD throughout the state.

It is absolutely critical that we secure the funding necessary to pay our DSPs a wage commensurate with their ability, experience, and performance. We have already seen valuable DSPs leave the field due to the hardship they face. If we do not act, many years of progress toward community integration, choice, and deinstitutionalization for people with I/DD will be lost. DSPs are our front-line essential workers and deserve more.

Significant cost increases related to mandated fringe benefits, repairs and maintenance, utilities, food, supplies, transportation, and insurance over the past 12 months have resulted in significant financial pressure on agencies. Additionally, since the I/DD provider agencies are solely funded by Medicaid, agencies are unable to increase reimbursement for services to compensate for increased costs of operations.

In addition to the program closures, a survey conducted by New York Disability Advocates (NYDA) during the 3rd quarter of 2022 found that:

  • The average statewide turnover rate is 35%
  • Turnover costs for non-profit providers have risen to more than $100 million
  • The average statewide staff vacancy is 18%, totaling nearly 20,000 unfilled positions
  • The average statewide starting wage is only slightly above $16
  • Nearly 2/3 of providers were unable to expand program offerings due to staffing shortages. As a result, we are unable to support more people despite the capacity to do so, which impacts and exacerbates an already long waitlist.

We are no longer talking about a future crisis, the crisis is now!

Call to Action: Address the Critical Workforce Shortage

We call on the governor and legislature to support people with I/DD in the FY24 NYS budget by:

  • Establishing a new Direct Support Wage Enhancement (DSWE) as part of the SFY 2024 New York State Through the proposed DSWE, provider agencies would receive an annual funding allocation of $4,000 per eligible employee to be used for the purpose of enhancing the hourly rate of pay for all staff that have direct care/support responsibilities for people with I/DD. This will provide agencies with the ability to increase the hourly pay by approximately $2.19/hour annually for eligible staff presuming each staff member receives the same increase. Funding must be utilized by provider agencies to enhance the rate of pay for direct support employees.
  • Including the statutory 5% Cost of Living Adjustment (COLA) in the FY24 budget, which is based on the US Bureau of Labor Statistics’ July 2022 CPI-U 12-month percentage change. *1
  • Commit to an acuity-based rate methodology that fully compensates providers at a level on par with state-operated programs supporting similar

In addition, we propose the state and federal governments:

  • Create a Standard Occupational Code (SOC): Direct Support Professionals are not designated with their own SOC by the Bureau of Labor Statistics, as a result, DSP wage and occupation data is not accurately captured. This diminishes the true impact of the workforce crisis, hinders opportunities for professional advancement, certifications, and the pursuit of a life-long career.
1   https://www.bls.gov/regions/mid-atlantic/data/consumerpriceindexhistorical_us_table.htm

We must acknowledge that DSPs deserve a path forward and people with I/DD deserve a passionate advocate at their side daily.

  • We support S.1437 (Hassan)/H.R.4779 (Rice), Recognizing the Role of Direct Support Professionals Act, to accomplish this goal
  • Expand the BOCES Program: A successful pilot program with Capital Region BOCES teaches students the skills necessary for a long-term career supporting people with disabilities. The pilot project aligns state education standards with quality DSP training metrics and offers certification in six areas. We recommend that the State establish a plan to replicate this program statewide by 2024.
  • Establish a Personal Income Tax Credit for DSPs: We recommend that a $2,500 refundable personal income tax credit be established for people who are employed by or contracted by not-for-profit provider agencies who are in 100, 200 or 300 direct care positions providing supports and services to people with I/DD. This tax credit could phase out on incomes over $50,000 and could be capped for people with incomes in excess of $100,000.
  • Create and Fund a Permanent Joint Credential and Career Ladder Program for DSPs: The state must implement a multi-tiered credential program for DSPs with a hybrid model of online, classroom, and work-based learning tied to increased pay for people completing each tier of the credential. By doing so, the state will be able to increase DSP tenure, and job satisfaction and provide a career path. In addition, the state must implement a statewide Career Ladder Program, which will provide a pathway to an associate’s degree in the human services field for those DSPs who have participated in the credentialing program and offer it at no cost to the participants. The program must provide job-specific higher education and career development to frontline workers in health, education, and human service occupations.

Issue:

OPWDD is in the midst of developing a new rate methodology, which will have significant implications for voluntary provider agencies for years to come.

Agencies have been engaging with OPWDD and other stakeholders during this process on the technical aspects of the rate redesign. The overall objective is to reform the reimbursement rate from a cost-based methodology to an acuity-based methodology.

However, provider agencies have expressed concerns about the potential outcome of the final rate methodology, which may result in significant long-term losses for provider agencies statewide. Agencies that have already invested in direct care wages above the regional average, will be penalized due to the proposed regional cost approach.

The Coordinated Assessment System (CAS) will be used to determine the relative acuity of a person, which in turn determines how much an agency must be reimbursed for supporting that person. However, it is not clear whether the CAS has the functionality to appropriately identify the level of support required for a person, leaving open the possibility of people being placed into lower-tier classifications that do not reflect the level of staffing required, and improperly reimbursing providers at a lower rate.

Call to Action: Tell OPWDD to Reform Rate Methodology that Works with Providers and for People with I/DD

  • The new reimbursement methodology must not contain any component that would remove or negate any investment the legislature or providers have made in the workforce.
  • Continuing education, training, and opportunities for the direct care workforce must be taken into consideration when determining rates in order to retain valuable talent and expand the ability of voluntary providers to support people with higher needs.
  • Access to the methodology used by CAS to determine acuity assessments must be made available to providers. Greater transparency will lead to a continually refined and more equitable system.
  • CAS assessments must accurately reflect the current acuity of a person and be completed within a reasonable timeframe to ensure appropriate placement and proper provider reimbursement.
  • Changes to rates, including the implementation of the annual COLA must be completed in a timely manner within 90 days from the enacted budget or final rate approval.

Issue:

Preschools and state-approved school-age programs that serve children with developmental disabilities are paid significantly less than it costs to operate them; the state has historically reimbursed these programs at a rate below allowable cost and even less of the actual cost. Chapters of The Arc New York cannot subsidize preschool programs without endangering other OPWDD-related programs. In addition, due to the teacher compensation gap between special education schools and public schools, we also continue to have extraordinary teacher recruitment and retention challenges. Federal grants provided to states through the American Rescue Plan Act (ARPA) in 2021 assisted education providers impacted by the pandemic, but this one-time infusion of aid will not sustain these programs into the future. *2

Special education schools need predictable and consistent growth factors and tuition rate increases along with other fiscal support to bring reimbursement in line with the cost of operations. Research shows that investing in preschool programs has a significant return on investment. *3

2 https://www2.ed.gov/policy/speced/leg/arp/index.html
3  https://live-penn-impact.pantheon.io/wp-content/uploads/2016/2015/06/Why-Invest-High-Return-on- Investment.pdf

Early intervention and Pre-school services are essential for young children with I/DD and other disabilities. For maximum brain development, it is crucial to receive education, training, and stimulation at the time in their lives when their young developing brains are at the most receptive and at their highest level of growth. As a result, going forward in their school program, many children will need limited or no specialized educational services, but those who do will require less because preschool has given them a timely and intensive start.

Students and children with intellectual and other developmental disabilities must be educated with appropriate supports and services in the least restrictive environment with free and appropriate services, which address their individual needs. However, these educational institutions have historically and inequitably been underfunded, which has caused teachers to be underpaid for their contributions and made it difficult to retain these valuable and critical educators.

Call to Action: Provide Equitable Funding for 4410/853 Schools

We advocate for the following to support and sustain preschool and early intervention opportunities for children with intellectual and developmental disabilities:

  • Support an 8.5% COLA and 5% wage enhancement for teachers and teacher’s assistants in the FY24 NYS budget to support and sustain pre- school and early intervention programs and close the gap in recruitment and retention of special education teaching staff.
  • Support legislation (S.6516/A.8013) that passed both the Senate and Assembly during the 2021 legislative This legislation would ensure funding parity in tuition and regional rate reimbursement for the provision of free appropriate public education to preschool and school-age students with disabilities.
  • Support A.10191 (Benedetto)/S.9132 (Mannion), which ensures that the calculation of the amount authorized to be retained by a school or program is conducted prior to certain applications of the methodology. This is vitally important to ensure that this investment has lasting positive impacts for our schools.
  • Apply the FY23 11% trend factor for evaluations and targeted service rates for aides and Programs, districts, and county representatives are reporting increased numbers of families seeking evaluations for their children and have noted a disturbing trend that many families are being forced to wait months for evaluations due the limited availability of evaluators.
  • New York State Education Department (NYSED) must review the teacher certification process and find solutions to streamline the path toward certification. This would help alleviate barriers to the recruitment of qualified educators. If some of the requirements were revised by NYSED, such as the number of exams to be passed and certification reciprocity between states, there would be a larger pool of potential candidates to draw from to fill vacancies.

Issue:

Barriers to equitable and accessible supports and services for people with intellectual and developmental disabilities (I/DD) has historically contributed to unnecessary hurdles. Having basic needs met such as health, transportation, where to live, where to work, and level of available supports remains a constant struggle.

Access to care across multiple medical disciplines finally became a possibility through teleservices and many of those flexibilities remain in place due to their inclusion in FY22 and FY23 NYS enacted budget. We have witnessed efficacy with this technology and support additional flexibilities and uses of technology. Primary among these flexibilities is allowing providers from out of state to participate in teleservice. Particularly in rural areas, access to transportation and the most appropriate medical care and professionals remain a challenge.

Reliable transportation is a key to independence, opportunity, and a full life within one’s community. Unfortunately, due to the workforce crisis, there are too few staff available to support this service. There are currently insufficient opportunities and access to transportation infrastructure to ensure people are able to live the life they choose.

Thousands of New York state citizens with I/DD are waiting for placement in a community residential setting, and many are in immediate need. The state has not provided an adequate way for families to plan for the future when providing care at home becomes difficult or impossible. People with I/DD and their families face an onerous placement process without a clear understanding of that process or the extent of their wait. However, while thousands await suitable placements, many residential vacancies go unfilled.

Vacancies within certified residential settings have grown in recent years because of an administrative requirement to fill the opening with someone from the “Emergency Need” placement category. Often, the care needs and behaviors of some people are incompatible with the home in which the vacancy exists, which prevents optimal person-centered care. In these cases, the vacancy remains unfilled, despite the fact it may be a suitable placement for people from the Current Need or Substantial Need categories.

Offering housing almost solely on an emergency basis makes it nearly impossible to guarantee placements will be found in the most appropriate, least restrictive home environment. These restrictions also lessen the person’s opportunity for choice in their own housing.

While not every person requires certified residential placements in their community, the array of supports and services needs to be maintained and expanded where necessary to ensure that people achieve as much independence as they need and would like.

Self-Direction is the practice of empowering people with developmental disabilities to manage the supports and services they receive. Under a Self- Direction model, the person with developmental disabilities chooses the mix of supports and services that work best for them, decides how and when those services are provided, and selects the staff and/or organizations that provide them.

Within the FY 20-21 enacted NYS budget, there was a modification made to self-direction through the Medicaid Redesign Team II (MRT). This provision restricts eligibility of services to two or more or three or more Activities of Daily Living (ADL). Exemptions were made for those with Alzheimer’s disease and dementia but left out people with I/DD. Assembly Gottfried and Senator Rivera introduced A4309/S3055 (NYS Legislature 2021-22 session) to correct this oversight and include I/DD within the exemption. We ardently support this legislation.

Additionally, under the current Self-Direction model, families and people who seek access must navigate upwards of 10 to 15 service types, all governed by differing regulations and guidelines, and requiring different forms and templates. Providers spend a significant amount of time developing, obtaining, reviewing, and correcting required documents, including mileage reimbursements, timesheets, vouchers, vendor and contractor invoices, monthly notes, and expenditure reports. It is unreasonable to expect families to understand this complex system, and its administration is a drain on provider resources. This complexity adds a significant barrier to independence.

Along with the pursuit of where and how to live, even though many people with I/DD want to work and have the skills to do so, there are limited employment opportunities available to them. As a result, the majority of adults with I/DD are either unemployed or underemployed. Although there has been progress made in recent years to modernize the Preferred Source Program, there still remains lacking opportunities for people with I/DD who want to work.

Call to Action: Make Equity and Access for Activities of Daily Life a Reality for People with I/DD!

The Arc New York will work to:

  • Seek additional service model innovations to include teleservices on par with current programs and rate conventions.
  • Ensure rates for teleservices are based on outcomes, rather than the mode of delivery
  • Advocate for adequate and specialized transportation for people with intellectual and developmental disabilities
  • Ensure that bonuses and workforce investments include frontline transportation employees
  • Support 6305 (Mannion) introduced in the 2021-22 legislative session, which requires the Office for People with Developmental Disabilities (OPWDD) to develop and maintain a community residence opportunities (CRO) waitlist and publish in a transparent manner
  • Reform the Certified Residential Opportunities (CRO) process to eliminate the emphasis on Priority I/Emergency Need placement and instead rely on the new acuity fees to support appropriate funding and placement of any person on OPWDD’s approved waitlist for residential placement;
  • Reform the Certified Residential Opportunities (CRO) process to make it more efficient, to include incentivizing serving higher acuity populations while building provider capacity to support such populations;
  • Ensure that wages and reimbursements appropriately resource an adequate network of supports and services for people in the system and people on the wait Without adequate funding of the workforce, the use of current capacity and expanded opportunities are not possible.
  • Eliminate the MRT II provision that restricts eligibility of services to two or more or three or more Activities of Daily Living (ADL) by introducing and supporting A4309 (Gottfriend)/S3055(Rivera) (NYS Legislature 2021-22 session)
  • Work with OPWDD and applicable state agencies to streamline the Self- Direction process, engaging with self-advocates and families to search for solutions
  • Introduce and support expanded employer tax credits for hiring people with disabilities
  • Secure additional funding for job coaches and other

The Arc of New York’s Position Statements expresses our foundational beliefs regarding the rights of individuals with intellectual and developmental disabilities to a rich, full, and equitable life, and our positions on the policies and approaches necessary to achieve that goal.

2023 – 2024 The Arc of the US Advocacy Priorities

For nearly 70 years, The Arc has been at the forefront of the fight for the civil rights and inclusion of people with intellectual and developmental disabilities (I/DD) and their families, playing a lead role in major victories in civil rights, community living, education, income security, and other important issues.

We have fought to close institutions and make life in the community possible, we have opened the school doors for students with disabilities to be included in the classroom alongside peers without disabilities, and we have advocated for affordable health care access. We are at the table for every major public policy fight and advancement impacting the lives of people with disabilities. We still have work to do – but we know we can succeed with strong federal policy advocates working hand in hand with grassroots activists like you.