Meetings – SWAN of NYS

SWAN swannys.org: Brad Pivar and Pat Curran of ENYDDA , Kathy Bunce and Barb Delong DDAWNY Family Committee, Dan Maillet of GROW, Margaret Raustiala of LIANDD, Elly Rufer & Jim Karpe & Meri Krassner of NYC FAIR

New York State: Kerry Delaney, Acting Commissioner OPWDD; Shelly Weizman, Asst. Secretary for Mental Hygiene; JoAnn Lamphere, Executive Deputy Commissioner of Person-Centered Supports OPWDD; Meagan O’Conner, Deputy Commissioner of Service Delivery OPWDD; Greg Roberts, Director of Legislative Affairs OPWDD; Kevin Valenchis, Deputy Commissioner OPWDD.

February 2018 Follow-up action items

There has been progress on four of the five August 2017 follow-up areas, and many signs of hope. And, those five items from last August remain a concern for SWAN (see next page). New items, numbered starting from :

6. Barb Delong- Schedule follow-up conferences with OPWDD and with HHS office. Meeting with OPW will need to deal with vacancies in MSCs and at DDROs.

7. Shelly Weizman- Arrange for early meeting with next State Medicaid Director, to assure that Jason Helgerson’s successor understands this unique population.

8. Jim Karpe- By March 9th send Shelly Weizman & Kerry Delaney the “SWAN requests for MAPP”.

Meeting Summary

SWAN requested this meeting to continue the process of involving families in making improvements to the services provided to individuals with Intellectual and Developmental Disabilities (I/DD) in New York State. SWAN announced that LIANND, a family advocacy group from both Nassau and Suffolk counties, has now joined SWAN. Discussion focused on six topics.

Follow-up on August 2017 Action items. See numbered list below.

Justice Center. Established with good intentions the Justice Center has created additional barriers to attracting and retaining direct service staff. SWAN is encouraged by the changes to date under the leadership of Denise Miranda. We are hopeful that the early promises of reform and transparency will result in a more effective and efficient process. We will continue to follow up.
bFair2DirectCare. SWAN had advocated, two years ago, to pay the DSPs a salary that better matches the demands made upon them. We are grateful for the approval of the salary increases that bFair requested. However, across the state, the problem of recruiting and retention is getting worse. In 2005, average DSP salary was 30% higher than minimum wage. In 2018, even with the raises, it is only 2% higher. In addition the money promised for the salary increases has not yet reached the agencies. SWAN members stated that they are now a part of the bFair coalition and support the
coalitions request for a spin up of the funding request so that the targeted living wage would be reached by 1/1/20.
Managed Care timeline rollout. Shelly Weizman assured us that the timeline for transition will not be impacted by Jason Helgerson’s departure.
High needs funding. SWAN brought up again that there is not yet any funding in place for those who are medically fragile, or who have difficult behaviors. We suggested that this problem needs a new type of service, to allow their needs to be met in a least restrictive setting, without endangering others.
MAPP. SWAN got an early demo of the Medicaid Analytics Perform Platform. We have a first set of requests to be put on the road map. These MAPP changes can be the beginning of the desired need for transparency. We believe that these requests are easy to implement, inexpensive, and absolutely essential to the transformation of the system. MAPP with these updates will be a “fast feedback loop” which will allow the monitoring the service delivery system, spot potential problems and take corrective action. SWAN will need assistance from HHS and OPWDD to ensure that these changes are given high priority in the MAPP road map.

February 2018 updates on August 2017 Follow-up action items

1. Kerry Delaney- Work to continue involving families in policy, messaging and governance. As of Feb 2018 SWAN has been invited to participate in workgroups on a number of topics, and we look forward to these starting.

2. Paul Francis and Kerry Delaney- The road-map for Managed Care roll-out to I/DD population. As of Feb 2018, not yet clear, aside from the July 1st CCO rollout.

3. Shelly Weizman- Justice Center feedback. As of Feb 2018, coordination between SWAN and the new leadership has been going well, and we hope this will continue.

4. Meagan O’Conner- Funding for high acuity individuals is still not available for individuals who are already part of the system. As of Feb 2018, there is now a workgroup on high acuity, but no meeting yet.

5. Paul Francis and SWAN- Paul Francis’s staff to provide information about possible ABLE tax credit policies. Then SWAN will come back with a response and recommendation. As of February 2018, we have not seen that information from Paul’s staff.

Summary of August 4, 2017 meeting with Paul Francis and OPWDD

SWAN Aug 4 2017 mtg with OPWDD and Paul Francis FINAL

Attendees

SWAN of NYS – Brad Pivar and Pat Curran of ENYDDA , Kathy Bunce of DDAWNY Family Committee, Dan Maillet of GROW, Elly Rufer, Jim Karpe, and Meri Krassner of NYC FAIR. Kathy, Dan and Meri on phone, the remainder in person.

New York State – Paul Francis, Deputy Secretary for Health and Human Services; Kerry Delaney, Acting Commissioner OPWDD; Shelly Weizman, Ass’t Secretary for Mental Hygiene; Helen DeSanto, Acting Executive Deputy Commissioner OPWDD; Megan O’Connor, Deputy Commissioner of Service Delivery OPWDD.

Summary

SWAN requested this meeting to discuss how families can deepen their involvement in making improvements in the services provided to individuals with Intellectual and Developmental Disabilities (I/DD) in New York State. Deputy Secretary Paul Francis joined Commissioner Kerry Delaney in welcoming an expanded role for families. Discussion focused on how to move from broad agreement to the “nuts & bolts” of participation.

OPWDD policy setting, messaging and governance. Commissioner Delaney summarized for Paul Francis the July 24^th meeting with SWAN and re-iterated her commitment to continuing to expand the relationship with SWAN: “The more coordination, the better off we all are.” K. Delaney noted SWAN’s August 3^rd review of a draft OPWDD communication.
Structure of Managed Care for I/DD. Commissioner Delaney and Deputy Secretary Francis provided assurances regarding how Managed Care will be rolled out for the I/DD population. They emphatically stated that the long-term supports and services would not be forced into a “medical model” with the goal of reducing usage. Instead, they repeatedly stated that Managed Care will be used as a tool to roll out reforms which provide greater flexibility and reduce regulatory overhead. Details and examples were not provided at the meeting. In addition Mr. Francis assured us that extra money the 90/10 split that is the funding for this program will remain with OPWDD.
Justice Center. SWAN’s Pat Curran highlighted that families want to be part of the solution to the problem of how to protect individuals with I/DD. Paul Francis welcomed SWAN involvement and stated that there are changes underway at the Justice Center including new leadership and other reforms. He assigned Shelly Weizman to make arrangements for SWAN to meet with Justice Center leadership, and have follow-up discussions throughout the state.

Pending action items

Delaney- Continue the work to “operationalize” the involvement of families in policy, messaging and governance, as detailed in the action items from July 24^thmeeting.
Francis and K.Delaney- Coordinate with their staff, to provide a briefing to SWAN on the road-map for Managed Care roll-out to I/DD population. Will highlight the programmatic reforms which create flexibility and streamline processes.
Weizman- Arrange meeting between Justice Center leadership and SWAN. Coordinate arrangements for follow-up small group discussion sessions around the state.
O’Connor- Will look into details of how to get high acuity individuals to qualify for “enhanced funding” or “intensive support rate” and talk with SWAN’s Kathy Bunce. Will then publish this guidance to SWAN and on OPWDD web site.
Francis and SWAN- Mr. Francis’s staff to provide information about possible ABLE tax credit policies. SWAN to come back with a response and recommendation, in advance of State budget negotiation season.

SWAN Meeting with OPWDD – 7/24/2017

SWAN – OPWDD Meeting Highlights – July 24 2017

OPWDD Representatives:

Kerry Delaney, Acting Commissioner,
Greg Roberts, Dir. of Legislative and Governmental Affairs
Neil Mitchell, Special Asst. to the Commissioner
JoAnn Lamphere, Dep. Commissioner Div. of Person –Centered Supports
Helene DeSanto, Acting Exec. Dep. Commissioner,

The representatives from SWAN were: Brad Pivar, ENYDDA, Will Mayerik, GROW, Elly Rufer & Jim Karpe, NYC FAIR, Kathy Bunce, DDAWNY Family Committee (on the phone)

Overall Acting Commissioner Kerry Delaney agreed with SWAN on the need for greater participation by families in three important areas: policy setting, messaging and governance.
Acting Commissioner invited members of SWAN to be part of an ad hoc workgroup on Value Based Payments. This group is to work intensively over the next few weeks to select the “first year” set of measures that make sense for members of the disabilities community.
JoAnn Lamphere is to investigate the details on how to expand the role of families in governance. The ad hoc working group on Value Based Payments is to be developed as well.
She also asked the members of SWAN to help publicize an OPWDD initiative called “Join the Conversation” https://opwdd.ny.gov/jointheconversation. In addition they requested assistance in setting up a statewide ‘listening tour” about the transition to Managed Care. They want input on what the structure and content should be for these sessions.
She also agreed that families should play a greater role in all aspects of policy creation from sitting on the boards of the CCO (Care Coordinating Organizations) to being part of the appeals/review process.
Concerns were raised about the CAS assessment tool. OPWDD agreed to send SWAN a copy if they can get it released by the creator, as there are issues of intellectual property involved.
SWAN agreed to help with setting up the ‘listening tours”to spread the word on the “jointheconversation” initiative and to follow up with the actions identified above.