Dual Comments - CCDC 05/12/12
Teri Bollinger, MA, MPA
Dual Eligibles Program Manager
Medicaid Reform Unit
Colorado Department of Health Care Policy and Financing
1570 Grant Street
Denver, CO 80203-1318
Dear Ms. Bollinger:
Please accept these additional comments on behalf of the Colorado Cross-Disability Coalition (CCDC). CCDC is the largest disability rights organization and the only statewide organization run by and for people with all types of disabilities. A significant portion of our membership are people who are dually eligible for Medicare and Medicaid. CCDC has a long term history of public policy advocacy in publicly funded health care programs focusing on services to people with disabilities of all ages.
We also re-submit our comments sent to Director Birch in November of 2011-attached. While we would no longer support the state becoming a Part D plan without significant discussion about due process issues, the remainder of the comments have not changed. We also continue to support the comments of the advocates coalition and remain very actively involved in a leadership capacity with the advocates coalition formed specifically to work on this project.
We believe that the dual eligible program has the potential to take the best of both worlds -Medicare and Medicaid and serve to transform how health care is provided to people who have both Medicare and Medicaid. It could also take the worst of both models and cause serious disruption and a subsequent explosion of cost and tragedy. We know the Department seeks to achieve the former, as do we. Along with our colleauges in the advocacy community we stand ready to assist you in achieving what we believe is a mutual vision.
We are pleased that the department is endorsing a primary care management program using a fee for service model, rather than a capitated model. We do not think capitation is appropriate without strong, enforceable mandates addressing numerous client rights issues. We appreciate the department not interrupting working relationships with providers and ongoing commitment to consumer controlled, community based care. We see promise in the Accountable Care Collaborative (ACC) model. We believe that at least two and possibly three of the Regional Care Coordination Organizations (RCCO) are open to working with this population. We have not seen evidence that all of these organizations are working proactively in this arena.
We also appreciate the ongoing dialogue and opportunity for input and believe that staff have worked hard. However, without specific resources (internal and external) dedicated to make input meaningful for clients who do not have an army of paid lobbyists to attend meetings for us and represent our interests, the quality of true client input will suffer. We again urge you to dedicate specific resources for this purpose.
Our specific comments on the proposal are as follows: Where there are quotations followed by the word CONTENT that material is a quote from the proposal.
Page 4: When discussing that duals have a proportionately higher cost we think it is appropriate to state that the department realizes that this is not the fault of duals, and that the department recognizes that some clients may have legitimate high cost needs. We refer to this content: "Nationally, dual eligible percent of Medicaid enrollment but 39 percent of its spending. This State individuals account for 16 percent of Medicare enrollment but 27 percent of its spending and 15"
Page 7 Content: "One of the workgroups was made up of clients and advocates; the other was comprised of providers and health plans."
We would like to know who attended these work groups-this should be made public.
Page 8 Content: "Ensure a positive client and provider experience and promote client and provider engagement." We are strongly supportive of this goal
Page 9 CAHI (Colorado Alliance for Health and Independence) must also have a role here -not only SEP (Single Entry Point) and CCB (Community Centered Board). CAHI should not be completely separate but should be a subcontractor or otherwise incorporated to help the ACC with the highest needs clients. The legislature created CAHI to be a care coordination model for the specific group of high cost/high needs clients that others do not want to serve or are unable to serve appropriately.
The RCCO network must incorporate consumer directed services and include an understanding that this will become the mainstream delivery method to provide home and community based services. Any network that is not supportive of this model should not be part of this program. Networks should include agency providers that provide independent living skills and can help move appropriate clients towards consumer direction. Agency based providers must be able to provide 24 hour backup and support independence. Primary care providers must also understand and support consumer directed services
Page 11 In the future please collect employment status at least for those of working age. Employment (or at least meaningful activity) has a positive correlation with improved health.
Page 12 These other programs (CAHI, PACE, SNP) should have similar benefits and responsibilities to ACC in terms of department attention and support and payment. Good public policy is to support a spectrum of care coordination options to see which programs can serve which populations effectively.
Page 13 Content "The Department and the RCCOs will work together to ensure that primary care providers who participate in the Medicare program are recruited to participate in the ACC Program and the Demonstration. To accommodate the enrollment of dual eligible individuals into the ACC" HCPF should make physicians choose between an RCCO and other model like CAHI or a SNP.
Page 13 What will the RCCO be able to control in terms of agreements with doctors? What if a doctor violates a part of this agreement?
Page 13 What specific activities do RCCOs do now to support appropriate care transition after hospital discharge Are there any examples of these activities?
Page 14 Will there be a way to incorporate social (non medical) supports in discharge planning? Will anything here allow SEPs to become involved in acute care so that we can have true integration? The current department prohibition on this is a problem, however their case load may not allow them to work with either acute care providers or RCCOs or ACCs. If HCPF wants real care coordination that includes Long Term Services and Supports (LTSS) you must address the case loads and responsibilities of SEPs.
Page 15 Content: "physicians with real-time access to behavioral and psychiatric consultations, regular screening of basic metabolic indicators for those on psychotropic medications (e.g., blood pressure, glucose, lipid, and weight levels)," This is fantastic!!!!
Page 15 hile we are pleased that the issue of combining physical and psychiatric care issues is finally being addressed, there must be more than data sharing. You need coordination with non medical supports to help people address issues caused by medications and brain disorders. For example, people with schizophrenia often have impaired motivation. This is due to the disease, not a character flaw. It is as real as physical paralysis. If the health care providers/system is going to tell them to take antipsychotic medication (which can be appropriate for some people at some times) it is cruel to then blame them for smoking and gaining weight. Since it is known that these medications cause weight gain it is only responsible to provide personal care support to help them engage in physical activity. For some clients this means a paid personal care provider to go with the client in the community to engage in physical activities, for others it might mean access to a drop in center where they can go on group activities with peers and for others it might mean assisting with purchase of equipment to work out at home. People want to improve but will need realistic and appropriate supports.
Page 16 HCPF should focus on the models of care that work for behavioral health care. Please pay attention to outcomes at CHARG resource center -the only mental health center that operates on a true partnership level (www.charg.org)
Page 16 Please include CDASS and the need to access CDASS directly from a nursng facility or hospital for clients who cannot be served by home health or personal care agencies, regardless of the reason.
Page 16 You need to have something about support for employment for PWD at least in the area of home health/personal care in workplace
Page 17 If HCPF is ever able to provide ancillary services dialogue should occur with actual clients. At this point our information from our dual eligible clients indicates that if additional resources are available the first choice for additional services is dental, the second choice is a way to help purchase technology such as an iPad or other tablet to help with scheduling, organizing, connecting with the world, etc.
Page 18 Please make sure that time you address home health that you also include CDASS providers-for example not all members of the care team will have a license as many PWD choose to use un-licensed providers for LTSS. Moreover, clients will be encouraged to have natural supports including peers and advocates on the care team.
Page 18 These programs must comply with Olmstead and focus on discharge home with supports not dumping people into SNF under the guise of post acute care.
Page 18 Content: "RCCOs are already beginning to implement care transition programs that incorporate evidence- based processes and programs that aim to reduce preventable readmissions." What are these programs?
Page 19 All of the care coordination programs mentioned sound terrific!
Page 19The Transitional Care Model for post hospital care, must include transportation in all parts of the state accessible to all, even those who need an attendant to take them. Current HCPF policy denies people in some rural areas access to transportation to medical care if the client is unable to drive by only offering mileage, and not having a way to compensate a driver when a driver is needed. Not all areas of the state have transportation services to take clients to and from appointments.
Page 19 It is great to implement tested protocols to help clients and caregivers manage their care as long the setting is really HOME not institution.
Page 21Are early intervention and respite services really available for adults in the BHO realm?
Page 22 Can clients disenroll from ACC to join CAHI or one of the other plans?
Page 22 CCDC feels that nursing facility clients should be allowed to be in any of these programs including ACC/RCCO, CAHI, PACE, etc. If someone is in an ACC and ends up in a SNF if they will be disenrolled from the ACC there is no incentive for the ACC to fix things so they can return home. HCPF should measure the ACC and other programs on how they manage these situations. This would also be a way for them to skew hospital discharge numbers or avoid difficult patients if nursing facilities not included. We hear complaints from nursing facility residents who want a doctor other than the one who comes to the facility every month or two. This would be a way to have an independent doctor overseeing these clients. ACC should figure out how to work with these facilities.
Page 22 Please see advocacy coalition comments and comments submitted to Sue Birch by CCDC in November of 2011 about engagement. While we appreciate the significant efforts to engage people further engagement processes must include dedicated outreach and training so clients are at an equal level with providers and other lobbyists. There must be dedicated funding to pay for transportation, other accommodations, and protocols must be in place to assure effective communication including adequate time to digest material before meetings. It is imperative that RCCO governing bodies include dual eligible clients. We also request that effort be made by HCPF and ALL contractors who receive these funds to hire PWD for the jobs created by this program.
Page 25 Please allow RCCO to address grievances and complaints informally, they can still track and report but do not make them require clients to file formal grievances. That has been a very bad practice and hurt relationships between clients and their providers and scares clients away. They should of course offer formal grievances without attitude problems or barriers but should allow clients to express concerns in any way the client wants.
Page 25 When discussing appeals, please add right to appeal whenever a service is denied, terminated, reduced or suspended.
Page 26 Please add something about the right to have notices that comply with Goldberg standards such as reason for action in plain English, regulation citing action, how to appeal, how to continue benefits when applicable, date of intended action.
Page 26 Please add that any streamlined appeal or grievance changes will be done in a way that does not reduce any rights clients currently possess
Page 26 Please see comments of advocate coalition on engagement. Please include advisory committee with teeth and structure and differentiate between clients and representatives.
Page 27 Please link to where public can access data on nursing facility pay for performance projects including what the facilities did and how much more they were paid
Page 29 We need gain sharing for clients in CDASS where clients who save money can keep half or even less than half to purchase things that will improve independence.
Page 29 There is a lot of concern about risk adjustment among the disability community due to lack of data and lack of value assigned to community based services and disincentive to stay healthy. This requires significant discussion.
Page 30 Please include CDASS
Page 30 Aligning behavioral and home health care will only work if you allow home health or CDASS providers to assist with cognitive and behavioral services and supports, including protective oversight and accompanying in the community
Page 30 It is imperative that HCPF do some significant and culturally competent education about how data will be used as many in the disability community have fears about data sharing being used in a punitive manner.
Page 32 HCPF should assure that this effort will collaborate with CFC (Community First Choice option of the Affordable Care Act). Our community needs to know this will not compete with CFC -the end of the proposal states a number of different programs with which this project will collaborate including future programs offered by ACA However CFC is not included and since CFC is most important policy issue/section of ACA to the disabled community -a substantial part of the target population-CFC should be mentioned prominently and promises to coordinate with this important initiative must be made.
Page 33 We believe there is additional infrastructure needed to include duals in ACCs.
Page 35 The first paragraph ends with discussing additional benefits, we thought there were no additional benefits?
Page 36 The proposal says that HCPF is meeting with nursing facility owners to discuss whether or not residents will be included. It is important to also meet with SEPs and LTSS community based provider agencies as well as CTS providers ---not to mention clients--- to discuss inclusion of nursing facility clients in this demonstration. We recommend that all meetings include residents councils of various nursing facilities. The LTC ombudsman and Culture Change Coalition should be part of the conversation also. Setting of care should not dictate which clients can benefit from a new program.
Page 36 Rather than simply exclude clients who are enrolled in existing organizations, we propose that HCPF take a leadership role in coordinating discussion among all parties providing care coordination. Such discussion would help define what we mean and figure out who can and should do what for whom. Medicaid and Medicare policy discussions should not be about any specific provider and their business line. All providers should have to compete for business and market to clients via provision of excellent care. No one organization can or should try to meet the needs of of this large and diverse organization. There is enough work to go around. The focus should always be client needs not provider or organizational positioning
Page 37 We are very concerned that we do not see either as a staff person or a contractor anyone whose job it will be to make sure duals are included in the process. To do this properly a lot of work needs to be done including but not limited to
* Development and implementation of culturally appropriate client based training
* Doing specific outreach and leadership development throughout the state to have a viable pool of clients to serve on all committees including RCCO boards
* Attending client meetings and events
* Sponsoring disability events so that presence is known and trusted
* Meeting with client leaders before and after policy meetings
* Assuring access at each meeting (going through check list to address all issues such as acoustics and air conditioning)
* Being point person for RCCO and HCPF staff in terms of training and problem solving client involvement issues
You cannot treat clients as one more stakeholder group with no more needs than providers Clients do not have the funds to hire lobbyists and consultants to represent their interests at meetings. If there is not a dedicated person to make sure the word is out it will not happen. You cannot expect non profits to do this without a contract especially if the same non profits are having to divert resources addressing issues such as client eligibility problems, reductions in services, etc. It makes much more sense to build this in proactively rather than have to use staff and management time to respond to blow ups after something happens. Colorado has had repeated experiences of instances where clients and the client perspective were not included in development of program or policy and the results are always time consuming and usually expensive. On the other hand there are just as many examples of cooperation and involving clients from the start. In these cases the department gets good results. There is a strong diverse client community that can be tapped to help but only if it is done properly and respectfully.
We made this comment in November (regarding the need for specific and dedicated resources for client engagement) and were assured that resources were included in the funding to write this proposal. While there was outreach and it was better than usual there was not adequate participation among dual eligibles because the steps required did not happen due to lack of staff and resources. We are not assured that each work group had participation from dual eligible clients. Informatin was often provided too late or too close to the meeting. There was not training or orientation provided or offered before the program started. CCDC had to seek funds to host a client oriented training and we were not able to do this until the end of March. The department should have bene providing this support at the start of the project. The program CANNOT and SHOULD NOT be implemented without directed and specific resources to assure involvement by the actual clients. Providers have funds and lobbyists to go to conferences and meetings and people who are paid to spend time figuring this all out. This creates a very uneven playing field but most importantly the perspective HCPF most needs will not be present causing more poorly implemented programs and the need to go back and redo things rather than building a project properly from the start.
Page 38 Testing of educational and communications materials with clients including payment for client time as testers or focus group participants must be required of the enrollment broker either directly or as a subcontractor. There should be specific funding for testing client materials from HCPF as well. Material design should coordinate and align with CFC and MFP
Page 41 Please add CDASS to acroynms.
In closing, CCDC appreciates the opportunity to comment and will be actively monitoring the development of this program. CCDC is committed to assuring that our motto "nothing about us without us" is applied to this and other HCPF projects. CCDC is also committed to making sure that dual eligible clients have the necessary supports to be contributing valued citizens. CCDC and the vast network of disability groups and organizations with whom we work have expertise that can help HCPF with this vast undertaking and hope that this expertise will be valued and used.
Julie Reiskin, LCSW
Executive Director (and dual eligible client)
Colorado Cross-Disability Coalition (CCDC)
655 Broadway, Suite 775 Denver, CO 80203 / 303.839.1775 office / 303.952.0528 VP / 303.839.1782 fax