Category: Opwdd

SWAN: BUDGET ADVOCACY

  • SUPPORT IMMEDIATE FUNDING FOR PEOPLE WITH DISABILITIES

The Governor’s proposed budget is a great step toward reversing a decade of chronic underfunding.  New Yorkers with Intellectual and Developmental Disabilities (IDD), and their families across the state appreciate Governor Hochul’s commitment to increase immediate funding of essential IDD services in the 2022-23 budget cycle.  New York’s IDD service system is collapsing due to years of chronic underfunding, budget cuts, diverted resources and low wages.  The proposed, immediate increase in funding is critically needed; however, New York must also prioritize long-term funding for people with IDD and the nonprofit workforce that supports them.  Services for people with IDD must be funded to remain in compliance with the Americans with Disabilities Act.

 

  • ADDRESS THE EMERGENCY DISABILITY WORKFORCE SHORTAGE

Direct Support Professionals (DSPs) are now leaving the field in record numbers, as are other front line workers in the field. There are dangerously high staff vacancy rates and work force gaps within service delivery systems, creating instability, insecurity and high risk for our loved ones.  Programs are closing as families across the state live in fear and isolation, without critically needed services and with little hope for the future.  New York has a unique opportunity to reverse this dangerous and destructive trend by investing heavily in the IDD nonprofit workforce now and ensuring continued, ongoing investment in the future.  This reoccurring investment is desperately needed to retain and rebuild a strong workforce.

 

  • INSTITUTE A MULTI-YEAR INVESTMENT IN THE DIRECT CARE WORKFORCE

Policy makers must commit to a long term nonprofit workforce investment plan to stabilize the field of service provision for people with IDD.  This workforce investment is the only way to ensure the future, safety and well-being of some of the most vulnerable citizens of our State, citizens who include the newly diagnosed as well as aging individuals and their aging caregivers, requiring an investment in resources for a growing, unmet need.  There are tens of thousands of New Yorkers with IDD whose needs require residential services, some having waited more than a decade, yet their needs are still unmet.  It is imperative that we ensure fair access to a diverse continuum of inclusive services for people with IDD to meet a wide range of need. This cannot be accomplished without New York’s honorable nonprofit workforce and compensation commensurate with the enormous responsibility they bear.

 

  • INVEST IN NEW YORK’S ECONOMIC RECOVERY AND SYSTEM OF CARE

New York is not alone.  Systems of care for the disabled across the nation face similar challenges. New York’s disabilities workforce is an essential statewide economic driver that contributes more than $2.2 billion in State and Federal taxes. Long-term investment in the disabilities workforce will only increase this contribution while supporting our communities and the health and well-being of hundreds of thousands of our citizens and families.  New York’s disabilities field generates an economic impact of $14.3 billion in communities across the state.  By investing now and in the future, New York once again has the opportunity to demonstrate great national leadership in providing supports and services to people with intellectual and developmental disabilities.

February 2022

  • WHAT WE ARE ASKING FOR:
  • Implement Governor Hochul’s Proposals for People with Intellectual and Developmental Disabilities (IDD) in the Final 2022-23 Budget:

 

  • Enact the 5.4% Cost of Living increase for nonprofit IDD service providers
  • Support the $3,000 DSP retention bonuses
  • Make the $3,000 DSP retention bonuses permanent and amend the hourly rate criteria to capture DSPs working part-time (15 hours or more) to full-time (30 hours or more)
  • Add a $5,000 personal income tax credit for DSP households earning under $100,000 (S.7643/A.9200)
  • Support statewide direct care staff workforce initiatives to professionalize and create a pipeline, including DSP professional job code, recruitment, credentialing  and career ladder programs
  • Amend Nurses Across NYS proposal to specify OPWDD and OMH as eligible workplaces
  • Provide 11% tuition rate increase for nonprofit, specialized preschools and private schools serving students with IDD, and allow them to keep it by discontinuing rate reconciliation
  • Support $4.5 million investment to support intensive behavioral services and expand crisis intervention services
  • Support the $50 million Nonprofit Infrastructure Capital Investment Program
  • Amend Statewide Healthcare Transformation Program IV to include IDD community based partners
  • Enact a requirement for OPWDD to clearly provide families with information about their placement on the State’s registry for residential placement
  • Long-Term Solutions:
  • Incrementally raise reoccurring DSP base wages over time to improve long-term recruitment and retention.
  • Support statutory reform to alleviate systemic regulatory burden
  • Provide a detailed plan to expand and preserve a diverse, person centered continuum of sustainable IDD supports and services to address unmet need, including a continuum of residential and employment supports and services.

The State-Wide Family Advocacy Network of New York State is an independent coalition of like-minded organizations from around New York State; comprised of the families, guardians, and friends of people with Intellectual and Developmental Disabilities. Our mission is to educate and inform policy makers, the media and the public on issues impacting our disabled children and loved ones. SWAN is an independent, all-volunteer organization that receives no government or service provider money; its activities are entirely self-supported. We are committed to a constructive, cooperative effort with all parties wishing to improve the lives of our loved ones, the citizens with disabilities of New York State.

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Administrative Systems and Service Delivery Concerns for New York State’s Individuals with Intellectual and Developmental Disabilities

  • Recent data justify growth in OPWDD’s typically stagnant budget.  Data collected through the Center for Disease Control’s National Health Interview Survey show 1 in 6 children (17.8%) diagnosed with at least one developmental disability in 2017 (increased from 16.2% in 2009).[1] 
  • Additional state funding must be made available to address the ongoing workforce crisis which continues to compromise continuity of supports and services for individuals with IDD within the nonprofit sector.  According to National Core Indicators, the average turnover rate for Direct Support Professionals in New York State is 33 percent.[2]
  • Additional, targeted state funding is necessary for high needs adult individuals with IDD who require a more acute level of care and are more at risk of being underserved, due to the increased labor and costs associated with their high level of need.  Federal education funding legislation (H.R.4676) was recently introduced in the House of Representatives on for this very reason; to provide additional funding for schools who serve students with more complex needs.
  • New York would be wise to pause and take a step back to assess its system transformation goals and benchmarks to; gather, analyze and publish data, establish strong, person centered quality measures, ensure consumer centered policies and create strong oversight measures.  “The problems of MLTSS programs for people with IDD have caused states to rethink managed care as the model for IDD service system reform.”[3]
  •  The critical foundation for case management through Care Coordination Organizations (CCO) in New York is not fully operational, as technology and monitoring infrastructure systems are not yet in place. “Case management and supports coordination for people with IDD is often a much more significant and involved role than for many other populations.”[4]
  •  “While much research has been conducted on whether Managed Care delivery systems result in better outcomes than fee for service (FFS), there is no definitive conclusion as to whether managed care improves or worsens access to or quality of care for beneficiaries”.[5]
  • Results of a recent survey of fifteen states that moved some Long Term Services and Supports for Individuals with Intellectual and Developmental Disabilities (IDD) to Managed Care Long Term Services and Supports (MLTSS) found that “most states did not realize a cost savings…” and that “there are no commonly accepted measures of quality” for the IDD population.[6]
  • Additional state funding will be necessary to implement MLTSS for individuals with IDD; however, the cost-benefit analysis is not necessarily beneficial.  “While there are savings achieved on long term supports and services claims, the amount of increased administrative expenditures outweighs savings from claims”.[7]
  • Experience in other states has shown many challenges in successfully transitioning to MLTSS  “… due to “lack of potential cost savings, limited experience serving people with IDD, limited state experience in setting managed care rates, need for meaningful quality measures, lack of managed care experience among providers, and the unique role of IDD case management and supports coordination…”[8]
  • “Recent experiences in other states demonstrate that a focus primarily on cost savings, especially in the short-term is unlikely to result in success and may drive reductions in quality and/or service cuts that harm IDD beneficiaries.”[9]
  • As major stakeholders, families and self-advocates play an integral role in the transformation of New York’s service provision for individuals with IDD and should be included in all stakeholder groups.  “…Successful programs are most likely to result from careful planning, significant and ongoing engagement with stakeholders, and a clear policy vision intended to advance the goals of integrated, quality home and community-based services.”[10]

The State-Wide Family Advocacy Network of New York State is an independent coalition of like-minded organizations from around New York State, comprised of the families, guardians, and friends of people with Intellectual and Developmental Disabilities. Our mission is to educate and inform policy makers, the media and the public on issues impacting our disabled children and loved ones. SWAN is an

independent, all-volunteer organization that receives no government or service provider money; its activities are entirely self-supported. 

[1] Official Journal of the American Academy of Pediatrics; Prevalence and Trends of Developmental Disabilities among Children in the United States: 2009-2017, October 2019; 144 (4) e20190811.

[2] Pg. 17, NASDDDS, Human Services Research Institute; National Core Indicators 2017 Staff Stability Survey Report. Jan 2019

[3] Pg 16, Center for Consumer Engagement in Health and Innovation; Service Disrupted: Managed Long Term Services and Supports Falling Short for Adults with Intellectual and Developmental Disabilities. November 2019

[4] Pg. 5, Health Management Associates; Current Landscape; Managed Long-Term Services and Supports for People with Intellectual and Developmental Disabilities, prepared for ANCOR. June 11 2018

[5] Medicaid and Chip Payment and Access Commission (MACPAC); Managed Care’s Effect on Outcomes

[6] Pg. 35, Intellectual and Developmental Disability Care Evaluation, University of Texas School of Public Health. December 31, 2018

[7] Pg 12, IDD LTSS Texas Health and Human Services Commission, Carve-In Cost-Effectiveness Evaluation Report. Deloitte, Jan11, 2019

[8] Pg 1, Health Management Associates; Current Landscape; Managed Long-Term Services and Supports for People with Intellectual and Developmental Disabilities, prepared for ANCOR. June 11 2018

[9] Pg 1, Health Management Associates; Current Landscape; Managed Long-Term Services and Supports for People with Intellectual and Developmental Disabilities, prepared for ANCOR. June 11 2018

[10] Pg 43, Health Management Associates; Current Landscape; Managed Long-Term Services and Supports for People with Intellectual and Developmental Disabilities, prepared for ANCOR. June 11 2018

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SWAN Needs Support From Legislature

  • SUPPORT OPWDD SERVICES

The Office for People with Developmental Disabilities (OPWDD) is THE voice and advocate in state government for the very unique needs of individuals with intellectual and developmental disabilities (IDD).  We seek additional funding, as well as administrative and legislative support to sustain critically needed supports and services, and to address unmet need.  Following years of imposed budget neutrality even as need has grown; it has become imperative that OPWDD’s budget be increased.  Only this can ensure that essential services for our most vulnerable citizens are safeguarded despite the self-imposed Medicaid budget cap.

  • SUPPORT OUR WORKFORCE

Sadly, the workforce crisis continues, as a result of both chronic inadequate state funding of nonprofit services for individuals with IDD and the raise in the minimum wage.  There are still alarmingly high vacancy rates, staff turnover and work force gaps creating instability for our loved ones. This shortage contributes to gaps in oversight, lack of care continuity and increased training needs, all of which create additional invisible costs, increased risk for individuals and potential liability for the state.  Efforts to finance, build and retain a strong workforce in the nonprofit sector for individuals with IDD are essential in sustaining New York’s service delivery system for our most vulnerable citizens.   

  • SUPPORT THOSE WITH COMPLEX NEEDS

Individuals with complex physical and/or behavioral needs require a significantly higher level of supports and services.  Current rate rationalization models have made it increasingly impossible for these individuals to access appropriate services due to the increased cost and specialty of care they require. We seek either additional/ongoing funding to ensure appropriate, sustainable service delivery for our most complex individuals or “needs based” funding mechanisms to provide incentive and ensure sustainability of service delivery for all levels of complexity.

  • GET CARE MANAGEMENT RIGHT BEFORE CONSIDERING MANAGED CARE

A new system of Care Management was introduced on July 1, 2018.  This shifted Medicaid Service Coordination to seven new Care Coordination Organizations (CCO) that oversee Care Managers.  They are a critically important component of access to and delivery of services.  Unfortunately, this well intended consolidation has fallen far short of expectations.  For many, the enhanced care management promised has been little more than an endless process of questionable assessments while many families have seen a revolving door of care managers.  Accurate evaluation and assessment of need, as well as meaningful quality measures must be fully and effectively operational; technology across all systems needs to be aligned and integrated so as to provide for consistent, data driven enabling and quality control. Without this resolution, moving on to Managed Care is not advisable.

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Managed Care Position Paper(s)

Please find  attached a paper from SWAN on what we see will be the effect on individuals with IDD if the state  transitions to  Managed Care. To summarize,  we are urging OPWDD, the Dept of Health, and our representatives in State Government to reconsider the timeline and scope of this transition.

For those who are interested, we are also attaching several other position papers on this topic that various agencies and associations have also submitted to decision makers .  These are posted for your information and education ONLY.

WE ARE NOT ENDORSING ANY OF THESE DOCUMENTS.   

SWAN will be doing a detailed analysis of the various elements and positions

SWAN

SWAN position paper on MC dated 082819final.docx (1)

 

Provider Papers

SWAN Meeting with Dr. Kastner: Leave-Behind Document- March 20, 2019

SWAN met with Dr. Kastner on March 20, 2019

Our discussion focused on the following three concerns:

  • Workforce Crisis
  • Implementation of Managed Care
  • Data Needs for System Health Assessment

Our leave-behind document is available here:

Final for Kastner March 20 2019

SWAN meeting with NYS Officials 9/22/18

SWAN meeting with NYS Officials  9/22/18

Our discussion focused on the following three concerns:

  • Workforce Crisis
  • Implementation of Managed Care
  • Data Needs for System Health Assessment

SEE ATTACHED MEETING MINUTES: SWAN October 2018 meeting with NYS Officials - final 11-12-18 (2)

 

New Commissioner of OPWDD Announced (1/4/19)

PRESS RELEASE:

“Governor Andrew M. Cuomo today announced new appointments to his administration, including his nomination of Theodore Kastner as Commissioner of the New York State Office for People With Developmental Disabilities. Dr. Kastner previously served as the founder and President of Developmental Disabilities Health Alliance, Inc., an integrated primary care mental health practice for persons with intellectual and developmental disabilities. He was also the Director of the Rose F. Kennedy Children’s Evaluation and Rehabilitation Center (RFK CERC) at Montefiore Medical Center and is Professor of Pediatrics and Professor of Psychiatry and Behavioral Sciences at the Albert Einstein School of Medicine where he also holds the Ruth I. Gottesman Chair in Developmental Pediatrics. Dr. Kastner earned his M.D. from the University of Connecticut School of Medicine and earned a Master of Science in population health from the University of Wisconsin. Dr. Kastner is board-certified by the American Board of Pediatrics in Pediatrics, Developmental and Behavioral Pediatrics, and Neurodevelopmental Disabilities and by the American Association for Physician Leadership as a Certified Physician Executive. Starting in 1976 as a Direct Support Professional with the Massachusetts Association for the Blind and Visually Impaired, he has worked in the field for more than 40 years. ”

 

Further information will be provided as it becomes available.