Category: Complex Needs

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

SWAN-data-analysis-1-14-20-FINAL-VERSION

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.

SWAN-legislative-messaging-1-14-20-FINAL-VERSION-2