Tag Archives: action alert
UPDATE People First Care Coordination Webinar for Individuals and Families
Last week, Acting Commissioner Delaney announced the availability of an online presentation on People First Care Coordination for individuals and families who receive services through the Office for People With Disabilities’ (OPWDD) service system. The presentation will describe plans for the move to enhanced care coordination, as well as provide the reasons for this shift and a timeline of anticipated next steps.
If you would like to attend this online presentation, please note that the online portion of the event which is viewable from your computer, is now full. However, you can still connect with just a telephone and listen to the presentation by following the instructions below:
Date: Monday, August 7
Time: 1:00pm – 2:00pm
To listen to the presentation by phone:
Call 1-844-633-8697
When asked for your Access Code or Meeting Number enter 647572988#
If you are unable to listen to the event at that time, it will be recorded and posted at this link for viewing at any time.
In the meantime, if you would like more information, please visit the People First Care Coordination section of the OPWDD website and feel free to submit any feedback you have about People First Care Coordination to care.coordination@opwdd.ny.gov.
CCO/HH – Memorandum of Concern by SWAN-NY
SWAN of New York State
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 ENYDDA GROW NYC FAIR
CCO/HHs – MEMORANDUM OF CONCERN
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.
URGENT: STOP MEDICAID CUTS NOW
URGENT!
We Need To Stop Medicaid Cuts
Please Make 7 Quick Calls Immediately!
Call & FAX
Representative Chris Collins P# 202-225-5265 F#202-225-5910
Representative John Faso P# 202-225-5614 F# 202-225-1168
Representative Peter T. King P# 202-225-7896 F# 212-225-2279
Representative Tom Reed P# 202-225-3161 F# 202-225-6599
Representative Elise Stefanik P# 202-225-4611 F# 202-225-1391
Representative Claudia Tenney P# 202-225-3665 F# 201-225-1891
Representative Lee Zeldin P# 201-225-3826 F# 202-225-3826
Medicaid funds 90% of NYS services for people with Intellectual & Developmental Disabilities (IDD)
THE BILLS CURRENTLY IN CONGRESS CUT MEDICAID TO THE BONE
NY Senators Schumer and Gillibrand already oppose AHAC
(American Health Care Act)
but many of our Representatives support it
We need to MAKE IT CLEAR to these Representatives that Medicaid cuts ARE A THREAT TO PEOPLE WITH ID
Here is a suggested script:
My name is __________. I am the parent/relative/friend of a person with developmental disabilities. I am calling to ask you to oppose any legislation that cuts or caps Medicaid. Medicaid funds 90% of essential services for people with developmental disabilities. Medicaid cuts seriously endanger our loved ones.
ASK YOUR RELATIVES AND FRIENDS TO MAKE THESE CALLS TOO
BE SURE TO FORWARD USING ICON BELOW OR VIEW IN BROWSER OR FORWARD THIS PDF
STATEMENT OF QUALIFIED SUPPORT – S.5842 /A.5840(Hannon/Lavine)
STATEMENT OF QUALIFIED SUPPORT
S.5842 /A.5840(Hannon/Lavine)
PURPOSE OF THE BILL
S.5842/ A.5840 would amend the Surrogate Court Procedure Act (SCPA) with respect to the Article 17-A Guardianship provisions in an effort to peremptorily address pending legal challenges to the constitutionality of the statute, as well as to update certain language and other provisions.
SUMMARY OF THE ISSUE –
We, as parents and family members, comprise the vast majority of Article 17-A Guardians in New York State. Article 17-A guardianships are specifically used for individuals living with an Intellectual or Developmental disability that began prior to age 22, including disabilities attributable to cerebral palsy, neurological impairment, autism, and those diagnosed with a traumatic brain injury.
Art. 17-a Guardianship petitions must be accompanied by two certifications by physicians (or one physician and one psychologist) that the disability exists and is permanent or likely to continue. The process is relatively simple and streamlined in comparison with the Mental Hygiene Law Art. 81 Guardianship, and can be done without an attorney.
Art. 17-A guardians are granted broad authority to make decisions on virtually all aspects of their ward’s life, including personal, medical and financial decisions.
Art. 81 Guardianship is tailored to the specific needs of the individual and grants no more power to the Guardian than is necessary.
Over time a number of court rulings have focused on the lack of specificity and flexibility of Art.17-a Guardianships. More recently a group called Disability Rights New York has challenged the Art. 17-A statute in Federal Court arguing that it can be, at least in some cases, a violation of the disabled’s right to due process regarding the notice of the filing of the petition and the overly broad scope of the Guardianship, among other things. That case is now pending in Federal court. We are concerned that if successful that case could, at worst, invalidate or at best create a confusing situation about all existing 17-A Guardianships.
POSITION OF NYC FAIR
The current Article 17-A Guardianship statute is an extremely effective, relatively simple means of protecting the safety, well-being and best interests of people with Developmental and Intellectual disabilities because there is oversight by their families and loved ones. Tens of thousands of families depend on these Art. 17-A arrangements. It is therefore vitally important that the NYS Legislature act to modify the law so that it will pass constitutional changes in order to avoid the possibility of the law being invalidated which would throw the status of existing Guardianships into question.
NYC FAIR generally supports the purpose and intent of S.5842/A.5840 to address potential constitutional issues and to update the statute. Therefore we urge the legislature to take such action soon, before the end of the current session.
However, it is imperative that any revisions address the following family concerns:
- That existing 17-A Guardianships, their terms and provisions, including those relating to designated stand-by and alternate guardians, be “grandfathered” in and remain in full force and effect;
- That no new additional reporting requirements be imposed on families already heavily burdened with the care and management of their disabled loved ones;
- That any role played by the office of Mental Hygiene Legal Services as counsel to a potential ward be clarified and limited to the gathering and reporting of evidence as to functioning level. This should be determined by the Surrogate, rather than having the office of Mental Hygiene Legal Services making any such determination itself. They have no training or expertise in understanding the disabled therefore they should not sit in judgment on the case.