Opwdd – Page 2 – SWAN of NYS

MAPP Requests from SWAN – 3/11/18

Below is the MAPP Requests from SWAN submitted on 3/11/18

MAPP requests from SWAN
Underlying principles
We believe that everyone involved in the New York State Medicaid system has the common goal of delivering services as effectively and efficiently as possible. Our suggested improvements to the Medicaid Analytics Performance Platform (MAPP) will provide accurate reports on services used by people with disabilities which can have a direct positive impact on the quality and efficiency of the NYS Medicaid system.

Complete document below:

MAPP requests from SWAN – 031118

SWAN MEETING HELD WITH OPWDD 4/19/18

SWAN April 19 2018 mtg with OPWDD

Meeting held on April 19, 2018

Attendees: OPWDD – Acting Commissioner Kerry Delaney, JoAnn Lamphere, Jay Kiyonga, Kate Bishop, Neil Mitchell, Meagan O’Conner, Greg Roberts,

SWAN: Brad Pivar, Pat Curran, Kathy Bunce*, Jim Karpe*, Meri Krassner*, Roy Probeyan*, Fran Kermian*, Dan Maillet* (*via teleconference)

Meeting held on April 19, 2018

Attendees: OPWDD – Acting Commissioner Kerry Delaney, JoAnn Lamphere, Jay Kiyonga, Kate Bishop, Neil Mitchell, Meagan O’Conner, Greg Roberts,

SWAN: Brad Pivar, Pat Curran, Kathy Bunce*, Jim Karpe*, Meri Krassner*, Roy Probeyan*, Fran Kermian*, Dan Maillet* (*via teleconference)

Update on open action items:

SWAN appreciates being a part of the workgroups and looks forward to continued active participation. Kerry Delaney will continue to involve families in policy, messaging, and governance. This will be a continued and ongoing objective.
Discussion regarding road map to Managed Care. OPWDD suggested that SWAN review what is available on website in terms key steps and target dates and provide any feedback/questions to OPWDD. Also blueprint document is in process and they expect it to be posted sometime in August. Involvement will initially be voluntary and will move to mandatory at some point. Jim Karpe suggested that a topic for our next discussion be regarding what they envision managed care to look like for the I/DD world. JoAnn suggested that a prerequisite be for SWAN to review the Transition document available on the website.
Brad Pivar has established ongoing communication with the Justice Center and has provided the Justice Center with focal points from each family group to facilitate involvement and local meetings. In addition the next SWAN meeting with Justice Center will be scheduled in combination with other meetings in Albany.
Still waiting for additional information on ABLE tax credit policies from Paul Francis’ office. SWAN will follow up with Shelly.
SWAN will follow up with Shelly W regarding her offer to set up meeting with new Medicaid Director
Great progress in communication with DOH regarding MAPP. SWAN white paper provided to DOH & OPWDD identifying key requirements. Follow up meeting occurred 2 weeks ago and good progress has been made toward first two priorities. By 4/27 we hope to know what the MAPP template will look like. JoAnn emphasized that the 27^th is a tentative date and reminded us of the “crawl, walk,run” discussion. It was also pointed out that not all data will be available until the CCO’s are up and running.

New Business:

Staffing

Discussion regarding the loss of several key people at some of the regional offices. There is considerable concern relating to the loss of deep institutional knowledge as the “baby boomers” are retiring. Kerry shared that the turnover in the last five years is unprecedented and they expect it will continue for another 5 to 10 years. They agree it is a major and critical issue. Succession planning is important and will continue. OPWDD acknowledged that it took over a year to identify the right person to replace Donna Limiti. (with Mary Grace Guiliano) Their focus is to keep the day to day operations up and going. OPWDD urges SWAN to bring any specific concerns to Meaghan and Abiba..
SWAN offered their support to provide advocacy to the “2^nd floor” as to the importance of OPWDD and the value they can provide. It was acknowledged that the budget reflects a 32 position decrease. Kerry shared that a majority of those positions have been in central office so the regions can continue to serve individuals. She indicated that these type cuts can often be dealt with without significant impact as they align divisions, seek synergy, etc. Jay indicated that whereas they hate to see any cuts at all, they are pleased that everything else in the budget was position and OPWDD received $120MM of new money.
Brad P. shared that participation in self direction has doubled, however the department has not grown accordingly. OPWDD indicated they would be happy to discuss further… Dixie (OPWDD) indicated that there has been grown in the SD staff in LI regional office

Coordinated Assessment System (CAS)

SWAN shared that there is significant angst among families across the state with the CAS and particularly around the appeal process (or lack thereof) The website doesn’t seem to have any information that is current that could help inform individuals/families. It was also communicated that it doesn’t appear that the MSC understands what is expected of them and can answer the detailed questions that families have. Is there a work process flow as well as a Role Clarity chart available? It was suggested that if loved ones of SWAN steering committee members were assessed, there would be first-hand knowledge that we could share and help to improve and communicate to others.
Kate Bishop acknowledged the concerns and shared that they have been conducting a lot of MSC education. Further, she indicated that they have a “quality review” process and not an “appeal” process and there is no time limitation on this. They did conduct a 100 person survey to see if the process was working. Almost 50% said the process had been followed. There is a written document to that provides the output. SWAN indicated that they are hearing that the output is terribly difficult to understand. OPWDD understands that there needs to be improvement and that they have created a guidance document to understand how to interpret the output. Also included is how the CAS interfaces with the person centered planning process. As it relates to SWAN participating In the assessment, Kate indicated that that may be a possibility Barb D. will submit names of willing steering team members to Kate.
JoAnn indicated that stakeholder advisory groups have been helping along the way. They understand how critical it is to get it all done properly. When there are problems, they are evaluating, is it the process, or the interpretation or not having the right people.
Jay indicated that OPWDD has informed CMS that the CAS will be used to set residential rates in July 2019. SWAN indicated the urgency to get it right.
Additional discussion regarding how families and individuals are informed about the feedback loop, the quality review process and how to confirm the results are a true reflection of their loved ones need and abilities. OPWDD is working on improving the website to provide increased knowledge. However, communication must occur that it exists.
JoAnn indicated that as they work thru improving information on the website, that families start with their MSC and then direct their concerns to Diane Woodward and Kate Bishop.

.CCOs

SWAN shared that all family groups have been hosting meetings with the CCO’s in that region presenting. All family groups have been also distributing the OPWDD schedule for public session and encouraging family members to attend. We will continue to host CCO’s at our meetings.
Pat C. indicated that many families do not have the time to go to these public forums. OPWDD shared they would be posted a recorded forum to their website They are also relying heavily on the MSC’s to communicate the message since they are the primary conduit of information. However, SWAN indicated that many times the MSC’s know less than we do.
Kate shared that lots of information was sent out to MSCs. One of the challenges is that there are 400 different organizations with different levels of competency. The move to CCOs will help empower the Care Manager and it will be easier to communicate when they have a smaller caseload
Internal discussions have been robust with many concerns, confusion and fear. Some families have indicated they are not receiving a standardized message
The written material provided by OPWDD and the brochure were well received. The “chart” was particularly helpful.
Kerry indicated that there are a number of protection and continuity of care provisions. She emphasized that the goal of CCO’s are not to decrease level of service.
OPWDD indicated that any MCO will need to have a very broad network
Barb D suggested we have another discussion in 4 to 6 weeks as CCO “go live” gets closer. Jay emphasized that if critical issues come up in the meantime to reach out sooner

Dated: 4/30/2018

SWAN appreciates being a part of the workgroups and looks forward to continued active participation. Kerry Delaney will continue to involve families in policy, messaging, and governance. This will be a continued and ongoing objective.
Discussion regarding road map to Managed Care. OPWDD suggested that SWAN review what is available on website in terms key steps and target dates and provide any feedback/questions to OPWDD. Also blueprint document is in process and they expect it to be posted sometime in August. Involvement will initially be voluntary and will move to mandatory at some point. Jim Karpe suggested that a topic for our next discussion be regarding what they envision managed care to look like for the I/DD world. JoAnn suggested that a prerequisite be for SWAN to review the Transition document available on the website.
Brad Pivar has established ongoing communication with the Justice Center and has provided the Justice Center with focal points from each family group to facilitate involvement and local meetings. In addition the next SWAN meeting with Justice Center will be scheduled in combination with other meetings in Albany.
Still waiting for additional information on ABLE tax credit policies from Paul Francis’ office. SWAN will follow up with Shelly.
SWAN will follow up with Shelly W regarding her offer to set up meeting with new Medicaid Director
Great progress in communication with DOH regarding MAPP. SWAN white paper provided to DOH & OPWDD identifying key requirements. Follow up meeting occurred 2 weeks ago and good progress has been made toward first two priorities. By 4/27 we hope to know what the MAPP template will look like. JoAnn emphasized that the 27^th is a tentative date and reminded us of the “crawl, walk,run” discussion. It was also pointed out that not all data will be available until the CCO’s are up and running.

New Business:

Staffing

Discussion regarding the loss of several key people at some of the regional offices. There is considerable concern relating to the loss of deep institutional knowledge as the “baby boomers” are retiring. Kerry shared that the turnover in the last five years is unprecedented and they expect it will continue for another 5 to 10 years. They agree it is a major and critical issue. Succession planning is important and will continue. OPWDD acknowledged that it took over a year to identify the right person to replace Donna Limiti. (with Mary Grace Guiliano) Their focus is to keep the day to day operations up and going. OPWDD urges SWAN to bring any specific concerns to Meaghan and Abiba..
SWAN offered their support to provide advocacy to the “2^nd floor” as to the importance of OPWDD and the value they can provide. It was acknowledged that the budget reflects a 32 position decrease. Kerry shared that a majority of those positions have been in central office so the regions can continue to serve individuals. She indicated that these type cuts can often be dealt with without significant impact as they align divisions, seek synergy, etc. Jay indicated that whereas they hate to see any cuts at all, they are pleased that everything else in the budget was position and OPWDD received $120MM of new money.
Brad P. shared that participation in self direction has doubled, however the department has not grown accordingly. OPWDD indicated they would be happy to discuss further… Dixie (OPWDD) indicated that there has been grown in the SD staff in LI regional office

Coordinated Assessment System (CAS)

SWAN shared that there is significant angst among families across the state with the CAS and particularly around the appeal process (or lack thereof) The website doesn’t seem to have any information that is current that could help inform individuals/families. It was also communicated that it doesn’t appear that the MSC understands what is expected of them and can answer the detailed questions that families have. Is there a work process flow as well as a Role Clarity chart available? It was suggested that if loved ones of SWAN steering committee members were assessed, there would be first-hand knowledge that we could share and help to improve and communicate to others.
Kate Bishop acknowledged the concerns and shared that they have been conducting a lot of MSC education. Further, she indicated that they have a “quality review” process and not an “appeal” process and there is no time limitation on this. They did conduct a 100 person survey to see if the process was working. Almost 50% said the process had been followed. There is a written document to that provides the output. SWAN indicated that they are hearing that the output is terribly difficult to understand. OPWDD understands that there needs to be improvement and that they have created a guidance document to understand how to interpret the output. Also included is how the CAS interfaces with the person centered planning process. As it relates to SWAN participating In the assessment, Kate indicated that that may be a possibility Barb D. will submit names of willing steering team members to Kate.
JoAnn indicated that stakeholder advisory groups have been helping along the way. They understand how critical it is to get it all done properly. When there are problems, they are evaluating, is it the process, or the interpretation or not having the right people.
Jay indicated that OPWDD has informed CMS that the CAS will be used to set residential rates in July 2019. SWAN indicated the urgency to get it right.
Additional discussion regarding how families and individuals are informed about the feedback loop, the quality review process and how to confirm the results are a true reflection of their loved ones need and abilities. OPWDD is working on improving the website to provide increased knowledge. However, communication must occur that it exists.
JoAnn indicated that as they work thru improving information on the website, that families start with their MSC and then direct their concerns to Diane Woodward and Kate Bishop.

.CCOs

SWAN shared that all family groups have been hosting meetings with the CCO’s in that region presenting. All family groups have been also distributing the OPWDD schedule for public session and encouraging family members to attend. We will continue to host CCO’s at our meetings.
Pat C. indicated that many families do not have the time to go to these public forums. OPWDD shared they would be posted a recorded forum to their website They are also relying heavily on the MSC’s to communicate the message since they are the primary conduit of information. However, SWAN indicated that many times the MSC’s know less than we do.
Kate shared that lots of information was sent out to MSCs. One of the challenges is that there are 400 different organizations with different levels of competency. The move to CCOs will help empower the Care Manager and it will be easier to communicate when they have a smaller caseload
Internal discussions have been robust with many concerns, confusion and fear. Some families have indicated they are not receiving a standardized message
The written material provided by OPWDD and the brochure were well received. The “chart” was particularly helpful.
Kerry indicated that there are a number of protection and continuity of care provisions. She emphasized that the goal of CCO’s are not to decrease level of service.
OPWDD indicated that any MCO will need to have a very broad network
Barb D suggested we have another discussion in 4 to 6 weeks as CCO “go live” gets closer. Jay emphasized that if critical issues come up in the meantime to reach out sooner

Dated: 4/30/2018

SWAN meeting with Paul Francis’ office and OPWDD – 2/18/18

Meeting held on Feb 28, 2018

Attendees

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.

Concerns about CAS (Coordinated Assessment System) – 11/15/17

SWAN – CAS White paper 11-15-2017 FINAL

Summary

The Coordinated Assessment System (CAS) is becoming the standard tool used by OPWDD (New York State’s Office of People With Developmental Disabilities) to determine the care needed for an individual with an Intellectual and/or Development Disability (I/DD).
OPWDD must make significant and immediate course corrections to this process.

The concerned parents and family members of New York State want to ensure the CAS is

Accurate
Administered effectively.
Amended if it does not accurately reflect the person.

We are most concerned about the process for amending a CAS report. Any assessment tool will sometimes fail, and consequently there must be a process to correct inaccuracies. Assessments of people with I/DD are especially prone to error, due to the high degree of variability in this population– variations in health, behavior, physical ability and cognition.

Amended thru an Appeals Process

Recent presentations by senior OPWDD personnel have pointed to the low rate of reported problems as evidence of the accuracy of CAS. Unfortunately, the low rate of reports is actually evidence of the imperfections in the current complaint and appeals process. The Medicaid Service Coordinator (MSC) is supposed to discuss the CAS results with the individual and their family within a few days of the completion of the report. The MSC is then supposed to inform OPWDD about any problems and report them to coordinated.assessment@opwdd.ny.gov, the designated email address for complaints and problems.

In practice, the process for error detection and correction can break down in many ways, including:

Individual does not currently have an MSC, due to high turn-over.
MSC does not inform the family that a CAS is going to be administered.

MSC does not send the CAS Summary to the family/guardian/individual.

No discussion of results with the family and individual.
Family and individual are not informed of complaint process.
Incomplete follow through on the family complaint.

Amendment Recommendations:

Introduce direct reporting from individuals and family members in addition to reports from MSCs.
Ensure that the family/guardian/self-advocate is informed of the appeals process for the CAS. Mandate a plain-English document outlining the process timelines and the appeals process. The person administering the CAS must obtain signatures of the individual and their family member on a copy of that document, with another copy left with the family/person.

Effective Administration

Families and providers have complained that behavioral issues and physical limitations have not been explored. “Sub-assessments” may not have been executed, even when clearly called for. Some assessors act as if they are compensated based on the number of completed assessments, and not on their accuracy. If this is true, it is ironic that as we start the process of converting to a Value-Based system, we are falling into the same old trap by rewarding Assessors for volume.

It is important to include support staff at the time of the assessment since the term “circle of support” may be interpreted by families to mean only friends and family.

Effective Administration Recommendations:

Accommodations for those who are not fluent in English.
When no response, record whether ‘chose not to’ or ‘unable to’ respond.
Use measures of quality and accuracy to determine compensation to the assessors.
Ensure that family members are always informed of the assessment.
In addition to family members, interview Direct Support Professionals and Residence Directors. Find DSPs with the most exposure to the individual.
Publish the CAS, including the branching structure, so that family members and professionals can ensure that appropriate sub-assessments are performed. When individuals know which questions they should be asked, they can serve as a real-time quality check.

Accuracy of the Instrument

Aside from problems with administration, the instrument itself is not fine-grained enough. Tasks are not broken down into sufficient detail, and the categories are too broad. Examples:

An individual who can tear lettuce was categorized as “able to perform 50% of meal preparation tasks.” Placed into the same category was another individual who can prepare a simple meal with no assistance.
Individuals are credited with independent toileting, despite their inability to wipe themselves and to wash their hands afterward. This has a direct impact on health.

Overall, the assessment often produces an inaccurate view of the individual. Someone who cannot feed or toilet themselves may be improperly classified as not needing support for these vital activities because they can do part of the task.

Accuracy Recommendation:

Given that the CAS instrument itself is unlikely to be revised, there must be a path which allows for corrections when needed through additional evidence. In some cases that will have to include supplemental assessments, including adaptive behavior scales such as a Vineland Adaptive Behavior Scale, ABAS^®-III, SIBͲR, ABESͲR2, or ABDS

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

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.

ASK:

$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.

SWAN NY

Capital Region : ENYDDA , Patrick Curran/Brad Pivar, ENYDDA@gmail.com

Western New York : DDAWNY Family Committee, Kathy Bunce/Barb Delong , ddawnyfamilycommittee@gmail.com

Hudson Valley Area: GROW, Barbara Masur/Will Mayerik, info@grow-ny.org

New York City: NYC FAIR , Jim Karpe/Meri Krassner/Elly Rufer, nycfair@gmail.com

Support of Direct Support Professionals – 10/16

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.

SWAN NY

Capital Region : ENYDDA , Patrick Curran/Brad Pivar, ENYDDA@gmail.com

Western New York : DDAWNY Family Committee, Kathy Bunce/Barb Delong , ddawnyfamilycommittee@gmail.com

Hudson Valley Area: GROW, Barbara Masur/Will Mayerik, info@grow-ny.org

New York City: NYC FAIR , Jim Karpe/Meri Krassner/Elly Rufer, nycfair@gmail.com

10/24/2016

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.