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Disability Policy Consortium Weekly Update
Greetings!
This issue of the DPC Update is devoted almost exclusively to Health Care Reform II. A couple of people were nice enough to send me a link to a news article on a state demonstration projects for dual eligibles (Medicaid and Medicare). Thank you, but we've been in the thick of it.
The DPC has been providing leadership to a coalition of disability advocates reparing a response to the MassHealth Request for Information RFI) on this very topic. The coalition, working under the name
Disability Advocates Advancing Our Healthcare Rights (DAAHR), has agreed to a statement that includes the 8 principles included below.
If you wish to have your name added to this statement, please use this link to email your name and location:
duals@dpcma.org.
If your organization is filing a response to the RFI, please feel free to reference any or all of the Principles below. Contact us at the email above to add your organization to the list of DAAHR coalition. Our logo is also available for you to down load and include in your response.
This work has been done under the leadership of Dennis Heaphy, DPC Health Care Advocate. Nassira Nicola, BCIL Director of Services, spent countless hours blending ideas and editing this document for which I personally am VERY GRATEFUL.
Bill Allan
Policy Consortium
wfallan@dpcma.org| 617-542-3822 |
Editorial: Quiet While Moving
This has been a quiet week on the work front as Mary Lou and I prepare to leave our home of 31 years (May 1, 1980). That's not to say nothing happened.
The DPC received feedback this week from the Department of Justice on our complaint regarding the MWRA water crisis (also an anniversary today - May 1, 2010). It seems DOJ is upset with our disagreeing with their assessment that the problem of ASL Interpreters in emergencies is with the TV stations, not the fact that the State doesn't have them next to the Governor or other officials when on camera.
On the same topic, you may remember we filed a 30-day demand letter because the Public Health Department announced on March 27 that there wasn't an emergency since radiation levels in the water were not high. Again, no interpreters. The 30 day period expired last Friday, but not before I received a phone call asking for a dispensation on the letter until Tuesday, May 3. Obviously granted.
More details as news next week.
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Cover Letter To Secretary Bigby:
Dear Dr. Bigby:
Please accept this response to the Dual Eligible RFI put out by EOHHS pursuant to new authority available through the Patient Protection and Affordable Care Act (ACA), MassHealth (Massachusetts' Medicaid program). It reflects the work of Disability Advocates Advancing Our Healthcare Rights (DAAHR), a cross disability committee comprised of disability, elder, and healthcare advocates. Following are a broad range of agreed-upon principles necessary for the successful development and implementation of the EOHHS initiative to improve health access and health outcomes for persons with disabilities between the ages of 21 and 64 in Massachusetts. By no means exhaustive, this is a living document sent to you as a prologue to a longer, more detailed conversation about the state's current effort to develop voluntary integrated care systems. The principles outlined in the document are in keeping with the spirit of the Dual Eligible RFI, so while not following its order, the document does reflect its intent.
Signatures
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Principle 1: Participant Enrollment
Participant enrollment must be voluntary, flexible and streamlined, and respect existing provider relationships.
Participant enrollment must be voluntary, flexible and streamlined to assist in recruitment and retention of larger risk pools. To be truly voluntary, enrollment must be "opt in," with community-based marketing systems created to provide Dual Eligibles with the information necessary to make informed choices about the most effective way to have their healthcare needs addressed. Dual Eligibles choosing to participate in Integrated Care Entities (ICEs) must have the freedom to disenroll from an ICE without having prohibitive "lock-in" periods that require participants to remain in an ICE for a set amount of time. To facilitate voluntary and meaningful choice, all quality measures and their results, as well as the criteria used to allow or deny coverage, should be publicly available on the EOHHS website, and in alternate formats upon request.
To encourage Dual Eligibles to opt in, and to provide quality care for those who do, access to services within an ICE should not be equal to or broader than in other delivery models. At a minimum, those with existing relationships with physicians and practices - including specialists in areas related to both physical and behavioral health disabilities - must not be forced to abandon these relationships or suffer penalties because their clinician does not have a relationship with an ICE. Continuity of care is essential; therefore, coverage of an existing provider should be mandated.
Finally, while it is recognized that the Dual Eligible ICE program is governed by guidelines set out by CMS, it is requested that EOHHS pilot voluntary ICE inclusion to the broader population of persons with disabilities between the ages of 21 and 64. If ICE enrollment is viewed as a means of increasing quality and reducing costs then it seems such a move would benefit not only persons with disabilities, but taxpayers. It would, furthermore, remove the artificial distinction between Dual Eligibles and other persons with disabilities on MassHealth - a distinction which creates bureaucratic barriers to improved health care access and outcomes for those not currently considered eligible under the new plan.
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Principal 2: Person Centered Care
Person-centered care must treat the whole person, and must be meaningfully directed and led by the individual.
Person centered care must be rooted in the principles of choice and self-determination, as framed by the independent living movement, with self-determination and optimization of participant agency serving as the guide for all care. In an ICE setting, this includes choice of care manager, choice of each and every clinician, choice of treatment, and choice of the ICE itself.
Person centered care must prioritize the fundamental rights of persons with disabilities, as outlined by the Americans with Disabilities Act, the Supreme Court's Olmstead decision, and the administration's Community First initiative. Beyond this, it must also take into consideration the unique social and political history of persons with disabilities as a demographic, including the systemic discrimination that leads to disparities in health access and health outcomes for persons with disabilities.
Person centered care is driven by the participant, and requires full and meaningful participation of the participant (surrogate/guardian) and other persons of his or her choice within the care team. This includes full participation in meetings and access to all medical records pertaining to the participant, both of which are vital to making an informed decision about one's own health care. Records, including care plans, must be available in accessible formats, including electronically, in a timely manner.
Person centered care must treat the whole person. This includes: recognizing that the person's medical care delivery may be affected by his or her life and desires outside of the medical environment; providing for access to routine services which are not directly related to the person's disability (including preventive screening services); and preventing secondary disabling conditions by providing access to disability-specific preventative services and non-clinical interventions. This may require nontraditional use of health care dollars - for example, funding interpreter-SSP services for Deaf-Blind persons to carry out Instrumental Activities of Daily Living.
Furthermore, person centered care for persons with mental/behavioral health disabilities must be recovery-oriented and operationalized using frameworks such as those outlined in the Substance Abuse and Mental Health Services Administration's 10-point "Core Consensus Principles for Reform". These principles emphasize the importance of "comprehensive and continuous care that takes into account the whole person rather than just physical health." It is also important that recovery be understood as a dynamic rather than a linear process, and that a person's mental and behavioral health care needs will evolve over the course of a lifetime.
Person centered care upholds the "dignity of risk" - that is, the right of consumers with disabilities to accept risks in their lives. If care is to be genuinely patient driven, particular emphasis must be placed on the right of a participant to grow and experience setbacks in his or her development of independence and agency (I am not sure what "agency" means here). For example, a person with intellectual or developmental disabilities should not be presumed to be "safer" in a supervised group setting and therefore denied the opportunity to try living more independently. Nor should any patient be prevented from voluntarily assuming the risk of refusing treatment, or refusing to allow certain information to be shared with or among clinicians.
Finally, person centered care is flexible, reflecting changes in circumstances and the choices of the participant. Care plans must be living documents, and care teams must be committed to frequently revisiting, re-examining, and adjusting them to address the current needs and priorities of the participant.
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Principle 3: Delivery System
The delivery system must include medical homes and a broad network of providers, and provide the full range of Medicare and Medicaid services, long term services and supports.
The ICE delivery system must contain safeguards to eliminate bias toward institutional care in the functional or financial eligibility criteria for long-term services and supports, and to allow consumers choice of the setting for care and the provider of care.
The delivery system must incorporate a "medical home" service philosophy, as defined and described by the Agency for Healthcare Research and Quality's (ACHRQ) Patient-home as "not simply a place but a model of primary care that delivers care that is: patient-centered, comprehensive, coordinated, accessible, [and] continuously improved through a systems-based approach to quality and safety."
The delivery model should, like the Senior Care Organizations as defined in Mass. Gen. Laws ch. 118E §9D, include "those services covered by Medicare Part A and Part B; the amount, duration and scope of Medicaid-covered services shall be at a minimum no more restrictive than the scope of services provided under MassHealth standard coverage, and shall include services covered under the home and community-based services waiver program; and services necessary for the treatment of mental health or substance abuse."
The delivery model should also be designed pursuant to the guidelines in State Medicaid Directors' Letter (SMDL #10-024, http://www.cms.gov/smdl/downloads/SMD10024.pdf) released by the Centers for Medicare and Medicaid Services (CMS) on November 16, 2010. These guidelines give states tremendous latitude to enable them to provide the fullest array of services which may not always be permissible currently under Medicaid and Medicare. These encompass "all the medical, behavioral health, and social supports and services needed by a beneficiary with chronic conditions," including long-term community-based supports and services.
The ICE model must be quality driven and broadly defined, with incentives that encourage ICEs to develop care teams creatively and responsively. This includes the ability to provide specialized services to subpopulations, including but not limited to: persons with mobility impairments, members of the d/Deaf community, people with intellectual and developmental disabilities, those with a history of substance abuse, and those with mental or behavioral health disabilities.
Participants must be permitted to select members of their care team from an open network of providers, enabling them to obtain services from specialists and other providers with whom they have had long-standing relationships, and who are geographically proximate to the participant but may not be eligible for or seek to participate in the ICE.
The fullest range of care team configurations must be permitted to meet the needs of the diverse population comprising the disability community. This includes linkages to clinical and non-clinical providers and services, as well as supports available through community-based care entities such as Independent Living Centers (ILCs), Aging Services Access Points (ASAPs) and Club Houses.
The expansion of available resources also extends to prescription drugs; formularies must include the broadest array of medications with emphasis on quality outcomes for the individual over cost-cutting. Clinician and consumer choice should supercede considerations of drug cost and rigid adherence to step therapy protocols.
ICEs must have the capacity to provide services across the lifespan of a participant with mechanisms in place to provide geriatric support services as participants age. For individuals transitioning into and out of ICE delivery systems based on age qualifications, the level of service offered to them upon transition must be equal to or greater than the service available in their previous system, and the transition process will be part of a coordinated, integrated transition system.
Finally, incentives must be given to potential participants that include benefits not currently available in the fee-for-service system. These services include but are not limited to: full dental coverage, management of purchase and repair of medical supplies and durable medical equipment (DME), coverage of transportation costs, and expansion of personal care attendant coverage to include persons with mental health issues unable to carry out Activities of Daily Living (ADLs) in accordance with their needs at different points in their recovery. The preliminary EOHHS proposal to cover additional community support services, including home modifications, assistive technologies, peer support, and paraprofessional health coaches to discuss wellness, nutrition, and chronic disease self-management is also an important component of a successful ICE model.Centered Medical Home Resource Center. |
Principle 4: Cultural Competence
Cultural Competence and Health Disparities
Integrated Care Entities must have the capacity to provide services appropriate to the complex needs of a diverse population.
Cultural competence is to be understood as the demonstrable capacity to provide services in a manner that is physically, linguistically, and attitudinally appropriate to meet the complex needs of a diverse population and addresses the social determinants of health that affect the health access and health outcomes of this population. These include but are not limited to: race, sex, age, disability, diagnosis, education, income, ethnicity, sexuality, and gender identity and expression.
Cultural competence includes the ability of the ICE to provide services in compliance with standards set out by the Americans with Disabilities Act, licensing requirements of DPH and benchmarks established by the Department of Justice and the precedents of the 2009 agreement between Partners HealthCare and BCIL/GBLS to ensure equal access to healthcare and services in medical settings.
Cultural competence is also to be understood as having the capacity to address disparities in health access and health outcomes across ethnic and racial populations within the disability community as a demographic. This includes demonstrating full compliance with HHS and DPH Cultural and Linguistically Appropriate Services (CLAS) standards as well as standards to be set by the State Office of Health Equity. Furthermore, ICEs should demonstrate the capacity to address disparities in health and health care between the population of people with disabilities and those without disabilities.
Such disparities include, for example, those reported in the Massachusetts Behavioral Risk Factor Surveillance System (BRFSS), such as higher rates of depression, isolation, and missing teeth. Cultural competence and health equity must go beyond race and ethnicity to address disparities by gender identification, sexual orientation, age and geographic location. |
Principle 5: Prevention
Prevention services must be accessible to people with disabilities and target additional risk factors.
Preventive services must be core competencies of ICEs. As such, they must address current disparities in health access and health outcomes by developing comprehensive interventions to prevent the development of secondary health conditions and disabilities. These interventions should integrate the strategies and priorities set out in the administration's Healthy People 2020 plan, including reductions in tobacco use and obesity, and provide access to evidence-based wellness programs such as the Stanford Chronic Disease Self-Management trainings.
Particular attention should be paid to areas of preventive care which uniquely or disproportionately affect people with disabilities, including but not limited to: provision and maintenance of durable medical equipment and assistive technology; respite care (including respite in non-institutional settings); and access to reproductive and sexual health care.
These and other prevention strategies and interventions must be developed in coordination with consumers, the Department of Public Health's Offices of Health Equity and Healthy Aging and Disability, and must be relevant to the needs of specific communities, including those who are underserved for reasons of race, sex, age, disability, diagnosis, education, income, ethnicity, sexuality, and gender identity and expression. |
Principle 6: Consumer Voice
The consumer voice must be incorporated into the design, implementation and monitoring of the program, and individual consumer rights must be protected.
The mandatory and structured inclusion of consumer voice is central to the successful creation, implementation and assessment of ICEs by EOHHS. Consumer voice involves partnering with disability, senior, and healthcare advocacy groups to develop standards and best practices, determine performance benchmarks for ICEs, and develop assessment tools to measure the quality of individual ICEs. The global payment paid to ICEs should incorporate funding for training opportunities by which disability advocates can assist ICEs in building their capacity to provide culturally competent services for persons with disabilities as well as certifying this capacity.
Consumer-directed oversight must also be included in consumer voice. The right to monitor quality of services is contained within the Patient Protection and Affordable Care Act and Governor Patrick's proposed payment reform bill (HO 1849); this right must be expanded because of the unique needs of the population being served by ICEs. There must be an oversight entity established independent of state government and not subject to state appropriations; it must be funded by a subscription fee paid by each ICE proportional to its participant enrollment; and it must be comprised of representatives from entities within the disability, elder, and healthcare communities. The scope of oversight is to include but not be limited to procurement standards, system-wide issues of quality of care, and standards for accessibility and ADA compliance. The oversight entity should also have a voice in the development of an actuarial assessment to be used in determining risk-adjustment schedules for global payment and bundled payment recommendations.
Appeal and grievance rights must also be guaranteed as a means of ensuring that consumer voice is protected in all care and coverage decisions. Individuals who disagree with a decision of an ICE or whose claim for assistance from an ICE is denied or not acted on promptly should be entitled to a timely and adequate notice of decision and an opportunity for an administrative hearing that complies with due process and provides all Medicaid fair hearing protections in 42 CMR 431.200 et seq., including the right for medical services to continue pending appeal and for judicial review of a final agency action. In addition, individuals enrolled in an ICE should have the benefit of the more protective of the rules governing managed care in the Medicaid and Medicare programs. However, only one set of rules and one administrative appeals process should apply. If a hearing involves medical issues such as a determination of medical necessity, the individual should be able to obtain an independent medical assessment at the expense of the ICE. Decisions regarding enrollment or disenrollment into an ICE should also be appealable.
The independent oversight agency should fill a consumer assistance role in the appeals/grievance process, including assisting consumers in exhausting options outside of the formal process, protecting appeal and grievance rights, and, at the option of the consumer, assisting with investigations of grievances. |
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Principle 7: Financing Mechanisms
Payments must reward increased quality of health outcomes rather than reduction in costs, and any savings must be shared in order to support enhanced services.
The system of payments must reward high-value service provision, defined from a patient-centered perspective - increasing quality of health care outcomes - rather than by a payer-centered perspective - i.e., reductions in cost. Protections and penalties must be put in place to prevent cost-cutting which results in cutting of essential wellness services. Instead, emphasis on money savings must be focused on areas which also reflect increased quality, such as reduced high-cost hospitalizations. Cost savings must be shared with the state, with savings being funneled back into funding pilot programs and public health initiatives to increase access and improve health outcomes for ICE members.
Global payment amounts and reimbursement rates to contracted provider entities should reflect sustainable rates, and should be made publicly available to encourage accountability and facilitate informed consumer choice.
The ICE system shall ensure that adequate funding is available for primary care and care coordination as well as services including social, home-based, and community-based care. Benefit packages must provide funding for services not traditionally covered under Medicaid and Medicare - for example, technology instruction, independent living services, and specialized skills training for people with visual impairments. Global payments should include coverage of costs necessary for compliance with the Americans with Disabilities Act, to avoid lack of appropriate service delivery resulting from "undue burden," as well as the cost of equipment necessary for patients to access educational and instructional materials.
Appropriate risk adjustment and quality measurement must take into consideration the expectation that health outcomes cannot be solely based on "rehabilitation" for people with chronic conditions or disabilities. Because of the poor health and risk of poor health outcomes of the costliest participants in ICEs, risk adjustment must protect small providers through appropriate risk sharing arrangements with Medicaid along with reinsurance to protect small providers against unforeseeable risk. Furthermore, systems must be developed to prevent ICEs from shifting costs to contracted provider entities, participants, or other publicly-funded systems or programs.
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Principle 8: Quality Measurement
Consumer satisfaction must be central to the assessment of services provided by the Integrated Care Entity.
Assessment of services provided by ICEs must be both qualitative and quantitative, incorporating contemporary frameworks of disability as outlined by the Institute of Medicine and World Health Organization. Assessment must be in keeping with requirements under the Patient Protection and Affordable Care Act as well as the philosophy of independence and self-determination. As such, measures should not only include health outcomes and health care utilization, but also quality of life and utilization of non-traditional care services.
Consumer satisfaction must be central to the assessment of services provided by ICEs.
Assessments should be conducted regularly over time and must include consumer protections such as questions about access to services that optimize independence. In order to minimize conflicts of interest and maximize the chance that consumers will feel comfortable speaking freely, the consumer-satisfaction assessment process should be administered by the independent oversight body (see Principle 6), and assessment interviews should be conducted by peers from the disability community. Both the evaluation criteria and the results of assessments should be publicly available and accessible.
Throughout the evaluation process the difference between disability measures and impairment measures must be central. Measuring disability shall be understood as measuring the social, environmental and other external factors that exacerbate or mitigate impairment. These external factors include but are not limited to: access to appropriate medical services, durable medical equipment, communication services, psychological support services, transportation and accessible housing. Measures of disability will be taken at the level of the individual, community, and the health system. Impairment, meanwhile, shall be measured according to the screeners contained within the American Community Survey - which ask about functional impairments such as "serious difficulty seeing," "difficulty walking," and "difficulty dressing or bathing" - in order to have a quantitative measure of care that is comparable at the state and national level.
Financial incentives and penalties shall be calculated according to the ICE's performance as compared with other ICEs, as well as the overall health outcomes of persons with disabilities in Massachusetts and persons without disabilities as measured by BRFSS health indicators. Outcome criteria should reflect the realities of the populations the ICEs are established to serve, and not encourage or reward discriminatory denial of care or coverage to the most medically frail consumers, for whom life expectancy, for example, may be inherently shorter. |
On the Calendar:Disability Reframed
A FREE Community Film Series presents: Disability Images of the Mid-20th century, Part I: "The Men" (1950) Introducing: Marlon Brando Saturday, May 7, 2011 2 pm to 5 pm An all-ages (18+) event.
Cambridge Citywide Senior Center 806 Massachusetts Avenue Central Square, Cambridge Come to a FREE matinee screening of a classic American postwar melodrama, the film debut of artistic icon Marlon Brando. In the first generation of Americans to survive spinal cord injury, 'The Men' was the first movie ever to depict the rehabilitation of a soldier with SCI. It is a striking artifact of mid-century social attitudes toward disability, and just as striking in its period messages about sexuality and gender.
The film will be followed by an open audience discussion, led by Brando scholar Bet MacArthur and Wayne Ross, Executive Board Member, New England Paralyzed Veterans of America. |
On the Calendar: World of Careers
Students in high school and college, adults who are looking for a job with disabilities, you are invited to participate in a career exploration workshop:
- Learn the details of jobs in today's workplaces
- Meet individuals who work in RETAIL, GREEN BUSINESS, TECHNOLOGY, RESEARCH, FUNDRAISING, POLITICS, the private and public sector
- Ask entrepreneurs about starting a business
- Gain information to plan for your own employment future
Come have fun and learn about several careers.
When: Tuesday May 24, 2011
Time: 9:30 - 12:30
Location: The VOLPE Center, Department of Transportation, 55 Broadway, Cambridge MA 02142.
Our Space Our Place, Inc, the Carroll Center for the Blind and Work without Limits invite you to a career exploration workshop unlike any you have ever attended.
Based on the concept of Speed Dating, you will have 15 minutes to conduct an informational interview with a professional: at the end of the fifteen minutes a bell will sound and you now have another fifteen minutes to conduct another informational interview with a new professional and so on and so on, until we break for lunch.
Space is limited.
To register please click on the link and complete the form
http://www.ourspaceourplace.org/eventdetails.php
If there are any questions, call (617) 459-4084
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| Job Opportunity: Winchester ADA
The Town of Winchester seeks an ADA Coordinator to manage the Town's programs and responsibilities to assure compliance with the Americans with Disabilities (ADA) Act, other Federal and State laws and regulations pertaining to persons with disabilities. Prepare,maintain, and submit Affirmative Action Policy and Plan, Compliance Reports and other relevant documentation to the Town Manager and the Disability Access Commission.
The successful candidate shall possess, at minimum, an Associates Degree and/or 3-5 years of experience working with ADA requirements at the coordinator level. Municipal experience preferred. Proficient computer skills in Microsoft Office.
Salary range $40,813 - $55,623 (pro-rated) 14 hours. A complete job description is available at www.winchester.us. Send cover letter and resume no later than May 16, 2011 to MaryEllen Lannon, Acting Town Manager, Town Manager's Office, 71 Mt. Vernon St., Winchester, MA 01890 or e-mail
The Town of Winchester is an equal opportunity and affirmative action employer.
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From the Net: Museum of Science
Do you want to bring your kids to the Museum of Science for FREE?
The MoS and TERC are looking for families to use and give opinions on a new portable, 3D dictionary of ASL science and math terms that is on an
iPod Touch.
We are inviting families with children that:
- are deaf or hard of hearing
- are between 5 and 12+ years old, and
- use ASL as their first language
Come to the Museum of Science for FREE
(free parking) and use the 3D ASL dictionary
to explore 2 exhibits:
- Run, jump and swing at
"Science in the Park"
- "Take a Closer Look" at a whole new
world with a microscope!
- Give your opinion of the 3D ASL
science dictionary
- Explore the Museum!
Please contact Tara Robillard by email:
tara_robillard@terc.edu or phone: 617-873-9872 for more information,
and/or to set up a visit date and time. |
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DPC Needs your Help!!!
The DPC uses the PayPal PayFast system for your tax deductible charitable donations. You do not need to have a PayPal account to use this system because credit card payments are also accepted.
The DPC also uses the Causes program for recurring donations (as well as one time donations). This is a great way to make a smaller monthly donation.
Donate by Mail
Make check or money order payable to:
Disability Policy Consortium
59 Temple Place, Suite 669
Boston, MA 02111 |
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