Comments on CO Proposal from the Colorado Cross-Disability Coalition, Family Voices CO and others

Submitted by Anonymous on June 29, 2012 - 12:30pm

From: Reiskin, Julie
Date: Fri, Jun 29, 2012 at 8:16 AM
Subject: Comments on CO Proposal from the Colorado Cross-Disability Coalition, Family Voices CO and others
To: CO-Medicare Medicaid Coordination

Please accept these comments on behalf of the Colorado Cross-Disability Coalition (CCDC) and Family Voices Colorado.   We created a dual eligible advocates coalition whose members likely share all or most of the comments outlined herein, however time prohibited us from formally seeking approval of all members.   CCDC is the largest disability rights organization in Colorado and Family Voices is the organization that provides advocacy for families with children with disabilities and special health care needs.  


Overall we are pleased with the proposal specifically pleased with the fact that Colorado is not seeking a capitated or corporate managed care model.  We appreciate that Colorado is not going to force people into any specific program and will let people leave an ACC/RCCO model if it is not working out.  There are some areas in which we feel more specific detail and assurances are needed.  These areas will form the bulk of our comments, the remainder of comments constitutes suggestions on specifics or information we felt was missing.   We have organized this into ten basic areas:  We are happy to provide additional information as well as a list of coalition members upon request.  


1)      General:  Executive Summary

                    a) The Executive Summary does not acknowledge that there is a legislatively authorized disability care coordination entity (CAHI) that does dual eligible care coordination now.  PACE and Denver Health also offer care coordination models.  They are not yet statewide but it is not accurate to say there are no current coordination models


                     b) We are concerned that people in an ICFID are not being included as a group to automatically not be enrolled.  This is an institutional setting not a care management model like the other entities mentioned (CAHI, Denver Health, etc.)  While this is a relatively small group, we fear that nursing facilities may use this to push exclusion for all institutional care. 

2)      Passive Enrollment Issues : 

                   a) The proposal is not specifically clear about what happens if a client who is passively enrolled in an ACC has a physician or provider unwilling to join.  It needs to specifically state that the client may choose to either leave his or her provider (and that the ACC must find them appropriate provider timely) OR that client may dis-enroll.  The proposal dances around this and says that the ACC should make every effort to enroll the provider, then says the client can be let out if the ACC fails to find them a participating provider.  This is not the same as letting all clients stay with their established providers.  The fear is that small providers may not want to sign up with anyone but who may have excellent established relationship with small numbers of dual eligible clients.  An ACC might be able to find a new primary care provider but that new provider may be some large clinic or one that otherwise is not the choice of the dual eligible client.  We need absolute assurance that ANYONE who wants out can get out, especially if clients are passively enrolled.   We are aware of situations where physicians have kept clients who became disabled but are not traditional Medicaid providers and may not want to become embroiled in a Medicaid program. 

                  b) While we do not like passive enrollment, we understand that this is going to happen.   We still believe that making a program attractive enough and allowing marketing would be a better model.  However, if there is passive enrollment the state should be required to contract with knowledgeable disability organizations to test the documents to make sure they are understandable before they are sent out.  A test is like a paper based focus group and the draft document is sent out to people of different abilities and from different cultural groups to assess if the document is understandable and culturally relevant.   Despite efforts to fix the problem on their own, the state has a history of sending out incomprehensible documents.  They also do not always understand how we perceive various items--for example in the past they were sent in a manner that led people to believe this was an advertisement or junk mail.  While they are working on better communication, we believe that CMS should require some client sensitive oversight to assure letters are comprehensible given the consequences of non-response.   HCPF does not have clients in paraprofessional positions as required by regulation so there must be some compensation to assure proper perspective on these important projects.  This must go beyond offering meetings for broad stakeholder groups and affirmative steps must be taken to secure competent client perspectives   If you require 60 days then at least two notices should go out, one should be a reminder notice.   How these notices are sent has everything to do with whether or not people will read them.  

3)      Care Coordination: We are very pleased that HCPF does not intend to add another care manager or care coordinator.  Some clients have multiple care managers, others have none and we would not oppose a care coordinator to those who have none IF REQUESTED by the client.   A care coordinator must be able to do things beyond just deal with Medicare and Medicaid benefits.  A decent care coordinator should be able to do activities such as assist clients with enforcement of the DME lemon law, writing reasonable accommodation letters for housing, assisting with some advocacy issues including navigation for other benefits related problems and assisting with Medicaid eligibility issues such as how to get on work incentive programs.  If a care coordinator is not able to do those tasks it is not really worth it.    The linkage between LTSS and acute care and advocacy on related issues such as housing, benefits issues, etc., is desperately needed.  The SEP agencies have sustained cuts over the years and have been told repeatedly by HCPF that they may not venture into anything outside of coordination and gate keeping the LTSS services.  They have caseloads well in excess of 100 clients and without additional resources will not be able to do much coordination.   In most cases it is not a matter of lack of willingness but lack of ability.  The Community Centered Boards while not as stressed resource wise may have some of the same concerns and certainly have full plates.   This problem needs to be solved or it will cause problems for implementation.

4)    Mental Health: We agree that there is a great deal of untreated mental health issues among the LTSS community particularly depression.  We are concerned about the ability of the current BHO structure to address this community. There are only a few providers mostly in the metro area able to work successfully with this community.  The BHO’s which have been around in some form for almost 20 years have not done adequate outreach and engagement with this community and do not have the cultural or practical skill sets to work with these communities without additional intervention.  It will be important if this is to work that the BHOs be required to contract with additional providers.  The proposal says the RCCOs are required to have relationships with the BHOs but nothing about what will be required of the BHOs.  More specificity about the accountability of the BHOs should be in the proposal.   We do appreciate the work will be done to address the problems in the BHO provider network where many of their providers do not take Medicare.

5)    Institutionalization Issues: 

                   a) We are VERY PLEASED that the Department will include nursing facility residents in this demonstration.  They need care coordination and     assistance more than anyone and this should be provided by an objective source in the community and familiar with community resources.           

                   b) We are pleased to see verbiage in the proposal about hospitals and their important role in care transitions.  Again, there seem to be requirements of the RCCOs but not of hospitals and they need to be required to cooperate.  Doing excellent care transition planning and preventing re-admissions will require a team effort.

6)   Linkages: We are pleased that the department intends to link this with other demonstrations and initiatives.   So far the MFP or CCT program seems focused solely on transitioning a small number of people out of facilities and providing extra services the first year out.  This is great but there are many systemic issues that need to be addressed within LTSS and it is important that this demonstration be involved with all efforts.  The future direction of LTSS will include significantly more emphasis of consumer controlled services and therefore this demonstration should be actively engaged in and supportive of the Consumer Directed Attendant Support Services (CDASS) program and all RCCO case managers should understand this important program and advocate for clients who choose this option.  In many parts of the state CDASS is the only way people with more than occasional care needs can live in the community.   We are pleased to see alignment of care but caution about addressing home health agency care as any sort of permanent model except as acute care as clients are increasingly moving to a consumer directed model (CDASS).  We urge the department to find a way to recover some funds on behalf of CDASS clients who are dual eligible.  CDASS often saves on hospitalizations and emergency room visits but the state pays 100% while the federal government reaps all of the benefits of the prevention.   We expect the RCCOs to support and promote the consumer directed model, particularly if they are going to help people get out and stay out of nursing facilities.

7)   Due Process and Beneficiary Protections: The section on beneficiary protections does not fully explain the existing Medicaid protection.  We believe CMS should specifically emphasize that NO current due process protections may be REDUCED or eliminated and each RCCO should be required to exhibit understanding of due process.   The description in the proposal on pages 22 and 23 does not accurately explain the Medicaid appeal rights.  For example Medicaid clients have a right to a full hearing and appeal if benefits are reduced, terminated or suspended in addition to these rights if benefits are denied or acted upon with reasonable promptness.   It is imperative that anyone involved in this project understand the full scope of Medicaid due process rights.

8)  Stakeholder (Client/Beneficiary) Involvement:  We are concerned about ongoing stakeholder involvement.  It is not acceptable to have numerous meetings and subcommittees held without adequate notice as it is impossible for the client or beneficiary community to keep with this as we do not have paid lobbyists to attend meetings.  They need to either contract with consumer run organizations to assure involvement (so we can hire staff to attend these meetings) or need to have meetings that have more advance notice.  We also suggest that the department adhere to the document on how to put on accessible meetings and appropriate protocols for outreach to people with disabilities that was purchased from CCDC through the Medicaid Infrastructure Grant.    Focus groups need to be managed by someone or an organization that has expertise with this specific community and whomever manages the focus group process needs to have the cultural competence to do this properly.  If this happens we agree that focus groups are a great way to get input.  Care should be taken to hear not only from advocates but from clients who typically do not attend meetings.    As mentioned in item four, HCPF must be required to go beyond broad based "stakeholder" opportunities.  Clients are not equal stakeholders, providers can get another job, clients cannot get another life.    HCPF must assure that specific staff and financial resources are dedicated to assure client involvement.  This can be in house or via contract but without this specific step there will not be adequate client involvement.  It is important to remember that professionals all have paid lobbyists or policy staff whose job description includes going to meetings.  These people are paid for their expenses involved in going to meetings.   Organizations like the Colorado Cross-Disability Coalition or Family Voices Colorado and other advocacy organizations, can find solid client representatives and provide the supports such as training, mentoring and even mileage or other transportation or personal care supports but not without funding.  CMS and HCPF need to realize that advocacy organizations that are free of conflict of interest (meaning that they are not providers or care managers) need resources to make these things happen.   CCDC submitted similar comments before the planning grant was submitted and despite verbal assurances that HCPF would take steps to assure adequate client involvement, that did not occur and client involvement was minimal and far outweighed by the extensive professional and provider involvement.  Simply inviting people to meetings and assessing physical access is not enough.  CCDC had to seek outside resources to provide training to clients and advocates and were only able to do one training and not until late March, meaning people missed a lot of the planning and work.    Many key advocates who attended our training had been attending some stakeholder meetings but said that they did not really understand what this was all about until the training.  Moreover, because we did not have funds to help with things like transportation many people did not get to participate in the training or at Stakeholder meetings.  Phone meetings work for some people but not everyone.   HCPF has not been aggressive in requiring the RCCOs to support clients who want to be included.  Some have done so voluntarily but others have not.  CCDC and Family Voices CO and other members of our coalition feel strongly that this needs to be a requirement with specific resources dedicated to assuring equal client involvement.  This should include internal and external resources, with a dedicated staff person (preferably a qualified person with a disability) at HCPF and funds to contract with external advocacy partners.  Literature examining both studies and anecdotal evidence clearly demonstrates that programs created to serve people with disabilities that are developed, implemented and monitored/managed without SIGNIFICANT  client involvement fail.   Too much is at stake here, financially and policy wise to allow this to fail because inadequate resources were dedicated and/or client involvement is done as an afterthought or inadequately.   

We are pleased that the Department understands the importance of having specific training for clients and advocates—we request a specific commitment to assure that resources are dedicated to this.   Professionals have paid staff to attend meetings and keep up on these issues.  With the vast changes in health care there must be training dedicated to clients and advocates to assure participation can be meaningful.  Funds not only for managing this but to assist clients and volunteer advocates with transportation, and other costs must be made available in an accessible way so that this training is available.  This is particularly important for people who will serve on advisory committees on the state and local level.  Statewide advocates should have involvement in the nature and setup of the training and should be included in the process.  Training must happen early before too many decisions are made and must not be delegated solely to the RCCOs. 

9)    Payment Model:The payment model does not allow room to subcontract to entities like SEPs and CCBs or hospitals to assure some cooperation.  We also do not see why physicians will sign up?   We recommend starting with the proposed model but keeping close tabs on spending and need and see this as a preliminary model.  Surveys or focus groups of participating and non participating providers will be necessary.  

10) Response to Concerns:   We are pleased that the department acknowledged some of the concerns we have outlined.    We believe that communication can be addressed in part by contracting with disability organizations for thoughtful advice and document testing coupled with slowing down the process and not having rushed meetings without adequate lead time.    As mentioned earlier we require a stronger assurance that NO client will be required to leave his or her provider even if the RCCO claims to offer a different provider.    We also would request that HCPF require the RCCOs to promote programs like CDASS and other programs that are particularly important to independent living.  RCCOs should work with area Independent Living Centers and should contract with them for local involvement.    The IL centers that do active community transition can be helpful with the nursing facility population.  


In summary, we are very pleased that HCPF is not seeking to force people into a corporate managed care model but is instead pursuing managed fee for service.  We believe this is the most appropriate model for this population.  We support coordinated managed care that focuses on better outcomes and uses carrots rather than sticks, but that will use a stick when client rights and essential protections are absent.   CCDC, Family Voices and other members of our coalition stand ready to be involved at all levels of implementation in this dual eligible project.   We request that CMS support this proposal with our requested requirements.  



Julie Reiskin,  Executive Director
Colorado Cross-Disability Coalition


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