CCO/HHs – Memorandum of Concern -7/17

 CCO/HHs – Memorandum of Concern

SWAN of NYS – Statement of Concern CCOs- PDF

Comments from the State-Wide Advocacy Network of New York State, a coalition of independent family groups focused on services for individuals with Intellectual and Developmental Disabilities.
DDAWNY Family Committee, ENYDA, GROW, NYC FAIR  

Executive Summary

As parents, we are attracted by the vision of an integrated network that improves and coordinates the services that our children receive. We would like this network to be effective and responsive, and it is in this spirit that we lay out our concerns about the ambitious agenda for the creation of care management for the IDD population as set forth in the draft RFA. Our hope is to help New York State create and maintain a person-centered system that helps all individuals with IDD live better lives. We understand that for the system to survive in a world of competing budget priorities, it must be able to point to the data-driven evidence of those better lives. Our belief is that to be successful, the system must have these characteristics:

  • A fundamental focus on appropriate use of services and supports which result in personalized goals, in contrast to medical model focus on reductions in avoidable use.
  • Outcome measurements and Value Based Payments based on that fundamental focus, which therefore
    • recognize the wide range of support needs.
    • do not penalize individuals with high acuity and their service providers.
    • reward CCOs and MCOs for maximizing quality of life, rather than rewarding them for minimizing the overall cost.
  • Ongoing structured family involvement in every step of the governance process, from creation of outcome measurements to policy definition, and all the way through to operational oversight.
Concerns: Family Involvement in CCO/HH’s

We hope you share our belief that parent participation will help the transformation process achieve the best possible results. To begin with, the core principal of Comprehensive Care Management is to coordinate services by assembling an interdisciplinary team to develop an individualized plan of care. Other disciplines recognize family advocacy as part of that team. We encourage OWPDD and DOH to examine how a family advocacy role can be developed for the CCO/HH.

We would like to see a role for family advocacy in the governance of the CCOs and MCOs. We recommend a strong ombudsman role and an appeals panel of family advocates.

Concerns: Measures for Value Based Payments (VBP)

The suggested outcome measures do not sufficiently take into account the wide range of support needs. While we want to support and celebrate those individuals who are capable of independent living and competitive employment, we are deeply concerned about the possibility of neglecting the higher acuity portion of the IDD population. Measurements are based on CQL/POMs, or use an increase in the number of individuals employed, the number who have moved into self-direction or more integrated settings outcomes that do not recognize acuity. The recommendations of the DD Subcommittee of the Clinical Advisory Group recognized the limitations of these measures. Applying this paradigm across the wide spectrum of individuals that comprise the I/DD population is not only inappropriate, it encourages service providers to limit the number of higher need individuals that they serve.

Earlier this year SWAN met with Director Helgerson to introduce ourselves and to share our concerns about the system transition to managed care. At that meeting we discussed the need for the development of better outcome measures. We propose that DOH and OPWDD form a work group with SWAN to create a process for working with families to develop these measures. We think a combination of surveys and workshops could be conducted around the state to identify a more comprehensive way to measure the outcomes for our loved ones. This same effort will also serve to educate families about the system transformation.

Concerns: Healthcare Bias in the RFA

The RFA reflects a healthcare bias, the medical model emphasis on preventing avoidable utilization. We recognize the importance of coordination between healthcare services and long term services and supports, and support the goals of reducing hospitalizations, promoting wellness, communication between providers, etc. However, for individuals with IDD that is just the starting point. The big challenge in IDD is the Long Term Services and Supports (LTSS). It is not clear from this RFA how non-medical LTSS will be affected by CCO’s.

As the creation of the CCO/HH’s is intended to be the first step to transitioning I/DD services into Managed Care, we are concerned there will be an effort to reduce rates for all types of services. For example, the current difficulties CDPAS individuals have with maintaining staff are due to Managed Care imposed rate reductions. Individuals using Self Direction with employer authority may be especially affected, but the impact of rate reductions would be felt everywhere.

Concerns: CCO Requirements

As outlined the MSC workforce will require extensive training as a pre-requisite for the job of Care Manager and it is not clear if there is the time or the resources to make that happen. The qualifications of new Care Managers defines a workforce that is not only has more training, but is a much more costly workforce.

Similarly, the IT requirements are considerable. The RFA mentions start-up grants, but there is no mention of how large they will be. We are concerned about whether these IT expectations are truly achievable.

July 24, 2017

Residential Needs – 10/16

Residential Needs

SWAN – Residential Ask PDF

Residential Needs HOUSING: Over 11,000 individuals with Intellectual and Developmental (IDD) Disabilities who need residential supports are currently on OPWDD’s Residential Request List:

  • 46% of Caregivers report being over the age of 60
  • 80% of Individuals placed in certified settings (from 7/2015-7/2016) were in CRISIS!

Their transition was not Person-Centered!

  • 53% of households have only one caregiver
  • 61% of caregivers report that they are experiencing health related issues that make it difficult to care for their loved one

OPWDD’s 2016-17 available supply of certified residential opportunities (vacancies + new capacity) is projected to be 1,421 – helping less than 43% of those living with aging caregivers.

NO Residential Development:

The $120 Million from 2016-17 budget dedicated to supports to meet the needs of people living at home and transitioning from the school system (Community Hab, Day Hab, Employment) is not available for certified housing.

Only $10 Million of the $120 Million dedicated in the budget STATEWIDE is allocated to residential supports for people who are not Priority 1.

$10 million = approximately $2 million/region = approximately 12 people per region could be supported in certified housing. But the DDROs were instructed to look at non-certified options, subsidies and less expensive options to serve more (which means higher functioning) people. Individuals requiring medication, nursing, or behavior support NEED care in a certified setting per OPWDD regulation.

The lack of funding is unfair and discriminatory to those with more needs.


$100 million in NEW spending (State Share) dedicated to NEW Certified Residential Development

$200 million (State and Federal share) in NEW annual spending= $40 million/region = approx. 1,333 statewide, or 267 people per region will be supported in certified housing development.




Capital Region : ENYDDA , Patrick Curran/Brad Pivar,  

Western New YorkDDAWNY Family Committee,  Kathy Bunce/Barb Delong ,              

Hudson Valley Area:  GROW, Barbara Masur/Will Mayerik,                                                                            

New York City:  NYC FAIR ,  Jim Karpe/Meri Krassner/Elly Rufer,

Support of Direct Support Professionals – 10/16

Support of Direct Support Professionals

SWAN – DSP wage Final Oct 2016

We add our support to the many voices calling for appropriate funding and wage increases in the 2017-18 NYS Budget for the dedicated Direct Support Professionals who work with our loved ones, people with IDD.

In these transformational times NYS wants to provide a wide range of Individualized and Community based services. Are we going to develop a large number of certified residences or simply concentrate on alternative residential supports? Can we successfully transition our sheltered workshop workforce to competitive employment? Will Self-Direction redefine the service system? Regardless of the answers to these or any of the myriad other issues that we are facing one truth stands out. If we do not have a stable, professional workforce none of these other questions matter.

The bFair2DirectCare coalition highlights the vacancy rate and the turnover that providers are dealing with. Though these statistics may be disconcerting, for our loved ones staff vacancies and turnover are personal. Vacancies means broken promises of services that are approved but not delivered. Vacancies mean activities have to be cancelled. Turnover isn’t just losing staff. Turnover is losing friends.

We ask an enormous amount from DSPs, from accompanying individuals in the community, administering medication at the right times and in the right doses, following eating protocols, assisting in activities of daily living for many different people, day after day after day. We also ask that DSPs understand and are responsive to people’s emotional needs. Direct Support Professionals are trained to deal with challenging behaviors and non-verbal people. Everything they do must be recorded and checked. DSPs are there when we can’t be and they are family when family members are not around. This is not a job for just anyone, it takes dedication and caring. Mostly, though, being a DSP should not and cannot continue to be a minimum wage job.

Ten years ago average DSP wages in the not-for-profit agencies were approximately 50% higher than minimum wage. Today those same agencies are struggling to meet the NYS minimum wage mandates. bFairto2Directcare is asking for an increase in reimbursement of $45Million each year for six years in order to reach a ‘living wage’ that is 18% higher than minimum wage in NYC and 24% higher than minimum wage in Upstate NY. While this may achieve a greater level of stability than we are currently experiencing, it falls very short of recognizing DSPs as the valued and skilled workers that they are. Of course this is not an issue for DSPs in the NYS workforce. Pointing out the disparity between the state and not-for-profit workers is rarely even part of the discussion. Still, for those of us lying awake at night wondering how our children will be cared for as we watch services degrade across the state, it’s difficult to understand why this huge difference continues to exist.

Finally, we encourage the administration to address these issues today. Six years is an awfully long time to achieve such a modest outcome. For those of us in our sixties and seventies who still provide care for our children with Developmental Disabilities, six years seems like a lifetime and may very well prove to be one.


Capital Region : ENYDDA , Patrick Curran/Brad Pivar,  

Western New YorkDDAWNY Family Committee,  Kathy Bunce/Barb Delong ,              

Hudson Valley Area:  GROW, Barbara Masur/Will Mayerik,                                                                            

New York City:  NYC FAIR ,  Jim Karpe/Meri Krassner/Elly Rufer,