OPENING THEDOORS. Solutions to Prepare Your Practice for People with Special Needs. Conference White Paper

Transcription

1 OPENING THEDOORS Solutions to Prepare Your Practice for People with Special Needs Exploring Integration for Arizona s Children s Rehabilitative Services Program Conference White Paper J. Mac McCullough,PhD, MPH Assistant Professor School for the Science of Health Care Delivery Arizona State University

2 Table of Contents Children with Special Health Care Needs... 2 History & Origins... 8 CRS in the Medicaid Era... 8 Transition from ADHS to AHCCCS Oversight... 9 Integration of Physical and Behavioral Health Care Specific Changes Enacted Linkages with Other State Funded Programs Conference Proceedings Opening Session Breakout Sessions Session A: Kevin Berger, MD, FAAP, FAAHPM, Phoenix Pediatrics, LTD Session B: Julia Lesselyong, PsyD, Integrated Geriatric Behavioral Health Associates Session C: Edith Bailey, MD, Children s Clinics for Rehabilitative Services in Tucson Keynote Address: The Yakima Neighborhood Health Services Experience Closing Session UnitedHealthcare Community Plan Special Needs Provider Designation References Appendix A List of Children s Rehabilitative Services (CRS)-Eligible Medical Conditions Appendix B Speaker Bios Appendix C Community Partner Showcase Participant Organizations... 51

3 Introduction Arizona s state-funded physical and behavioral health programs deliver care to a diverse population for a wide range of conditions across numerous settings. Developing a system that can effectively provide this care is a far-reaching effort that includes patients, their families, providers, allied care professionals, community partners, program administrators, and countless others. These challenges are especially prevalent in serving individuals with special needs. Arizona has been recognized for success in serving high-need individuals. In 2014, United Cerebral Palsy s The Case for Inclusion report identified Arizona as the top-ranked state in providing care for persons with intellectual and developmental disabilities,. 1 The report found that Arizona ranked as the best state in the nation for Promoting Independence (including providing care within the community as opposed to within institutional facilities) and for Keeping Families Together (including family support and proportion in a family home). Notably, Arizona has held the ranking of the top performing state for serving individuals with intellectual and developmental disabilities for three consecutive years and substantial changes in the reporting methodology, suggesting that Arizona is a top-performing state no matter how the rankings are determined. This report will explore the components of Arizona s system of care for individuals with special needs. In particular, Children s Rehabilitative Services (CRS), the program serving Arizona s children with special health care needs, will be explored. Recent programmatic changes place CRS at the forefront of efforts to reduce fragmentation by developing an integrated health care delivery system. 1

4 Chapter 1: Children with Special Health Care Needs Children with special health care needs are defined by the U.S. Department of Health and Human Services Maternal and Child Health Bureau as those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally. 2 The population of CSHCN is broad and diverse. State- and national-level data on CSHCN are available through the National Survey of Children with Special Health Care Needs (NS- CSHCN). 3 The most recent data available come from 2009/2010, the survey s third iteration. Unfortunately, methodological changes make cross-year comparisons difficult, though given the changes occurring in the CRS program, in Arizona, and across the U.S. since the survey s first iteration in 2001, these comparisons may be difficult even with more harmonious data. It is also important to note that the CRS definition of special health care needs may not always correspond with the definition used by the NS-CSHCN. As shown in the appendix, CRS defines CSHCN through the presence of a specific set of medical conditions. The NS-CSHCN uses a five-item screening survey to assess for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally. 4 Research suggests that alternative methods of defining and identifying CSHCN have high levels of agreement, 5 though no formal study has been done to compare CRS to national definitions. With these limitations in mind, findings from the survey suggest that overall, an estimated 13.9% of Arizona s children and youth have some form of special health care need. 3 While this is slightly lower than the national average (15.1%), it still means there are an estimated 241,000 2

5 children in Arizona with special health care needs. Prevalence data for CSHCN are shown below in Table 1 for Arizona and the U.S. Table 1: Prevalence of CSHCN in Arizona (2010) Prevalence of CSHCN Arizona (%) U.S. (%) CSHCN Prevalence Percent of children who have special health care needs CSHCN Prevalence by Age Age 0-5 years Age 6-11 years Age years CSHCN Prevalence by Sex Male Female CSHCN Prevalence by Poverty Level 0-99% FPL % FPL % FPL % FPL or more CSHCN Prevalence by Hispanic Origin and Race Non-Hispanic White Black Other Hispanic Spanish Language Household English Language Household Source: NS-CSHCN 3 (FPL: federal poverty level) The NS-CSHCN also collects data on system-level performance for issues impacting CSHCN, including a set of core outcomes identified by the Maternal and Child Health Bureau of the Health Resources and Services Administration. These outcomes include indicators for child health, health insurance coverage, access to care, family-centered care, and impact on family; measures are shown below in Table 2. One especially relevant group of measures to note are those in the access to care category. 6 In several areas, Arizona s CSHCN face lower levels of access to care than national averages. Some of these including difficulty in getting a referral or lack of usual source of care 3

6 stand out as areas where improved integration and system linkages may yield dividends for patients, families, providers, and payers. Table 2: Performance metrics for Arizona CSHCN ( ) National Indicators Child Health CSHCN whose conditions affect their activities usually, always, or a great deal Arizona (%) U.S. (%) CSHCN with 11 or more days of school absences due to illness Health Insurance Coverage CSHCN without insurance at some point in past year CSHCN without insurance at time of survey Currently insured CSHCN whose insurance is inadequate Access to Care CSHCN with any unmet need for specific health care services CSHCN with any unmet need for family support services CSHCN needing a referral who have difficulty getting it CSHCN without a usual source of care when sick (or who rely on the emergency room) CSHCN without any personal doctor or nurse Family Centered Care CSHCN without family-centered care Impact on Family CSHCN whose families pay $1,000 or more out of pocket in medical expenses per year for the child CSHCN whose conditions cause financial problems for the family CSHCN whose families spend 11 or more hours per week providing or coordinating child's health care CSHCN whose conditions cause family members to cut back or stop working Source: NS-CSHCN 3 The NS-CSHCN also provides deeper data on the existence of medical homes for CSHCN. 7 Medical homes have been shown to be an effective means of delivering high quality care and are especially recommended for the CSHCN population. 8,9 As shown in below in Table 3, Arizona scores near the national average in many of the medical home performance categories. 4

7 Table 3: Medical home performance data for Arizona CSHCN versus U.S. averages 3 Components of a Medical Home Arizona (%) Accessibility Has a personal doctor or nurse Family-Centered Care (% who report Usually or Always ) Doctor spends enough time Doctor listens carefully Doctor provides needed information Doctor helps parent feel like partner in care Comprehensive Had no problems getting referrals when needed Has a usual source for both sick and well care Coordinated (% among CSHCN receiving 2 or more types of services) Received effective care coordination, when needed Received any help with arranging or coordinating care Very satisfied with communication between doctors, when needed Very satisfied with communications between doctors and schools, when needed Culturally Effective (% who report Usually or Always ) Doctor is sensitive to family customs and values Source: NS-CSHCN 3 Three specific measures on which Arizona appears to fall short of the national average are the proportion of families of CSHCN who report problems getting referrals when needed, the proportion of families with a usual source of care for sick and well care, and the proportion of families satisfied with the communication between doctors and schools. While the reasons for the relatively lower scores on these measures are likely multifaceted, one commonality between them is that they might all be at least partially addressed by the presence of a care delivery and financing system with higher levels of integration between primary, acute, and behavioral providers. As will be discussed in this report, Arizona has made changes that help address these capacities since these data were collected. U.S. (%) The integration of primary, acute, and behavioral care services is especially important in light of the prevalence of behavioral health needs of CSHCN in Arizona. The NS-CSHCN surveyed 5

8 respondents about a range of specific comorbidities. Four specific conditions that may have major behavioral health components are highlighted in Table 4 below. Table 4: Prevalence of behavioral health-related conditions among CSHCN in Arizona Anxiety problems ADD or ADHD Behavioral or conduct problems Depression Estimated number of CSHCN with condition 38,878 64,096 35,578 28,023 Percent of all CSHCN with condition 17.2% 28.4% 15.8% 12.4% By Age Group 2-5 years 14.5% 20.5% 20.6% 5.4% 6-11 years 15.1% 26.9% 12.4% 8.3% years 20.7% 33.4% 17.8% 20.0% By Sex Male 17.1% 36.7% 19.2% 10.9% Female 17.4% 15.9% 10.5% 14.7% By Insurance Private insurance only 11.5% 26.3% 9.4% 9.2% Public insurance only 24.8% 32.1% 21.5% 17.4% Both public and private 22.0% 22.4% 17.0% 10.4% Uninsured 12.8% 26.0% 20.8% 13.1% By SSI Status Receives SSI for disability 36.0% 45.5% 25.4% 19.9% Source: NS-CSHCN 3 (ADD: Attention deficit disorder, ADHD: attention deficit hyperactivity disorder, SSI: supplemental security income) While national comparisons are not available, the raw number of individuals estimated by the NS-CSHCN as having each of these conditions suggests that the magnitude of behavioral health needs among CSHCN in Arizona is high (note that these diagnoses are not mutually exclusive and that the estimated numbers should not be summed). The estimates suggest that, among CSHCN that receive public insurance only, more than one in six is depressed, more than one in five suffer behavioral or conduct problems, nearly one in four suffer from anxiety problems, and nearly one in three have been diagnosed with ADD or ADHD. Clearly there is a large proportion of the CRS 6

9 population that could benefit from the integrated provision of behavioral health services with acute care and primary care services. 7

10 Chapter 2: Serving CSHCN in Arizona: The Children s Rehabilitative Services Program History & Origins Arizona has a long tradition of providing some element of care for children and youth with special health care needs (CSHCN). The program currently tasked with providing such care for Arizonans is Children s Rehabilitative Services (CRS), a program with origins dating back to 1929 as the Arizona Society of Crippled Children. 10 The Society was founded as a charitable organization caring for underserved children in Arizona ten years after the creation of the National Society for Crippled Children, the organization now commonly known as the Easter Seals. 11 Originally serving children suffering from poliomyelitis, club foot, and other serious conditions, the program received its first federal funds in 1935 under the Social Security Act. 12 The program continued and evolved until 1982 when, in a move to help the program obtain matching federal funds, it was incorporated into Arizona s new Medicaid program. CRS in the Medicaid Era Using the nation s first section 1115 waiver, the Arizona Health Care Cost Containment System (AHCCCS) began in 1982 a using a managed care model to integrate care for enrollees. Since CRS was open to both AHCCCS and non-ahcccs enrollees, the CRS program was excluded ( carved out ) of the AHCCCS managed care model and remained under the stewardship of the Arizona Department of Health Services (ADHS). 13 Thus, CSHCN enrolled in AHCCCS must have been dually enrolled in both CRS and AHCCCS. Primary and acute care for these children and youth was delivered through the managed care providers in their AHCCCS network, while care a AHCCCS-enabling legislation was passed in AHCCCS itself was implemented in October 1982 and has been an independent state agency since

11 related to their CRS-eligible condition was delivered through the CRS system. 13 This dual-track system gave rise to reports from CSHCN families and providers of added administrative burdens and confusion over benefits eligibility. 12,13 To add to the confusion, until 2008 ADHS managed the care delivered to both AHCCCS and non-ahcccs enrollees in CRS, potentially creating boundary issues between the two systems of care. 10 The provision and administration of CRS services was then contracted out to a provider network, with changes in contractors potentially adding further confusion or administrative challenges in the short-term. For example, anecdotal reports of such challenges were reported in 2004, when a CRS contract was awarded to a provider network at St. Joseph s hospital, and in 2008, when a statewide CRS contract was awarded to the Arizona Physicians Independent Practice Association (APIPA). 14 Each transition meant the skilled and dedicated professionals involved in providing care to the CRS population have had to re-affirm and sometimes re-negotiate their program participation. In one of the more important programmatic shifts since its 1929 inception, budgetary constraints forced Arizona legislators to limit eligibility for CRS. While the program was previously open to Arizona CSHCN who met prescribed medical eligibility criteria, an additional provision was added that limited CRS only to AHCCCS-eligible individuals under age 21. The limitation meant that non-ahcccs eligible children were no longer eligible for new or renewed coverage; the result was a CRS population entirely comprised of AHCCCS enrollees, setting the stage for a shift in program oversight. Transition from ADHS to AHCCCS Oversight Beginning in fiscal year 2012, ADHS agreed to consolidate administrative oversight of the CRS program under AHCCCS. The move was made in light of notable progress in compliance with contract-specified deliverables (e.g., increased contract compliance from 49% in 2006 to 95% in 9

12 2009 ) and high satisfaction with overall care. 15 Both ADHS and AHCCCS stated that the move was part of their ongoing efforts to improve administrative efficiency. 15,16 The move made even more sense in light of the 2010 programmatic scale back that limited CRS to AHCCCS-eligible children and the fact that the administrator of CRS at that time, APIPA, already had a working relationship with AHCCCS. 17 Currently, coverage and care under CRS is available to all AHCCCS members under the age of 21 who meet any of the medical eligibility criteria prescribed by administrative code. As of 2013, there are approximately 130 eligible medical conditions grouped in 11 major physiological systems (see Appendix). 18 CRS currently serves over 24,000 Arizona children and youth with annual expenditures of over $100 million. 10

13 Chapter 3: Integration of Physical and Behavioral Health Care Even before the FY2012 administrative consolidation of CRS under AHCCCS was completed, work was underway to streamline the delivery system for CSHCN in Arizona. CRS enrollees were having to enroll (and subsequently re-enroll) in at least two care plans one for care related to a CRS-eligible condition and another for primary care. Individuals with behavioral health needs enrolled in a third program. Research has shown that increased administrative complexity can be a barrier to enrollment in health insurance 19 and that enrollment in health insurance is associated with improved access to care. 20 There were also several examples of successful integration of acute care, primary care, behavioral care, and other services for CSHCN from other settings (see box on following page) Data in this area was available from the NS-CSHCN. As shown in Tables 2 and 3 above, when compared to national averages, more Arizona CSHCN reported having difficulty getting referrals (30.2% in AZ versus 23.4% nationally) and lacking a usual source of care (14.7% in AZ versus 9.5% nationally). AHCCCS thus began a multifaceted data-gathering approach to determine a delivery system reform solution. 11

14 Box 1: Evidence for Integration of Care for CSHCN from Across the United States Integration of care can take many forms, including general care coordination or the precisely-defined patient-centered medical home (PCMH). 26 Examples of such efforts for CSHCN from other settings may provide some guidance for Arizona s CRS program, enrollees, families, providers, and stakeholders in terms of anticipated opportunities and challenges. A meta-analysis by Homer et al. of 30 studies of medical homes for CSHCN found that individuals receiving care in a medical home experience better outcomes than those receiving care in nonmedical home settings. 2 These effects may be related to demonstrated impacts of under-coordinated care including duplicative or inadequate care, dissatisfaction or stress for children and families, decreased safety, or increased costs. 27 Evidence also suggests that having a medical home is associated with higher levels of PCP visits. 28 Yet children served by public health insurance have been shown to have lower levels of access to a medical home. 29 The fact that CRS is now one of the first public programs in the U.S. serving CSHCN through an integrated care approach across medical and behavioral providers reiterates this point. Care coordination models have been proven effective across the spectrum of CSHCN complexity levels, 21 suggesting that it is both relevant and important for care coordination reforms to take place at the system level rather than for specific patients only. One concern raised in prior study is the issue of labor allocation for care coordination activities within practices. Instances in which the physician performs a large proportion of care coordination work can lead to relatively high costs. 21 A care coordination model used by a large pediatric hospital and medical school addressed this by designating a special needs program pediatric nurse responsible for care coordination activities. 27 Yet such an approach may be less feasible in a smaller-sized setting. Building on these experiences and other evidence from the field, AHCCCS solicited feedback from stakeholders to identify ways in which the program might be reformed to better meet their needs. The information gathering process was multi-faceted and included in-depth interviews with, focus groups, and an online survey of CRS families and providers. Public comment was also sought and a formal community forum was held in early Details of the data gathering process can be found on the CRS website. 30 Findings from interviews with CRS families and providers, as summarized in the report prepared for AHCCCS by St. Luke s Health Initiatives with support from Raising Special Kids, 31 are shown in the box on the following page. 12

15 Box 2: Findings from St. Luke s Health Initiative report to AHCCCS Interviews & focus groups revealed CRS families want a system in which: There is access to a full range of quality primary care and CRS specialty services, ideally as close to home as possible and with as short a wait as feasible. There is improved coordination of primary care and CRS specialty services. While integration is appealing, families do not want to give up their current primary care provider, who understands and serves their family well, may be seeing other family members, and is conveniently located. Other healthcare services are integrated if it makes sense to do this, most importantly behavioral health, as long as this does not result in a loss of services or service quality. Families have a choice of providers first and foremost, but also a choice of health plans, if feasible. Co-location of primary care and CRS specialty services is an option, but not a requirement. Most important is having access to primary care in the home community and being able to take other children in the family to the same place. CRS specialty services are co-located at least for children who need services long term and whose needs are more complex. It may be that not all children need co-located services. There is access to care coordination, with the option of being able to do this oneself. Care coordination is most needed initially, when the child is young and/or newly diagnosed, when surgeries and other specialized procedures are scheduled, and at transitions. There is an option for the young adult to stay in the integrated health plan past age 21, if circumstances indicate that this is needed and in the best interest of the young adult. A transition plan should be developed and implemented. Families have the option of taking all their children to the same primary care provider, mainly in the provider s private office, but possibly in the CRS clinic if this does not slow down the care of children with special health care needs. 31 Interviews & focus groups revealed CRS providers want a system in which: Coordination of primary care and specialty care is critical for children with special healthcare needs. Working as a team of providers is critical. Coordination of care can be aided by comprehensive, up-to-date, and accessible records. An integrated healthcare system for children with CRS eligible conditions should be as clear and simple as possible for families to navigate. The focus of the integrated healthcare system should be placed on what is best for children. This focus should be evident in all aspects and at all levels of the healthcare system. There should be options for families that take into consideration where they live, the availability of resources in their local community, child and family circumstances and preferences, and the child s condition. Providers should have the knowledge, skills, experience, and interest required to serve children with special healthcare needs and their families. Well-qualified primary care providers and specialists who are interested in serving children with special healthcare needs should have the opportunity to participate in the integrated healthcare system and not be excluded by having the health plan limit services to those provided by a single hospital or clinic setting. 13

16 At the same time St. Luke s Health Initiatives report was published, AHCCCS was midway through a multi-year process to implement meaningful reforms to CRS. The objectives for this integrative reform, as stated in the agency s April Waiver Amendment Request to the Centers for Medicaid and Medicaid Services, 17 were to: Transform care for children with special healthcare needs by operating a fully integrated health care system that would enroll CRS-eligible children into one MCO that would manage their CRS, physical and behavioral health care needs. Improve care coordination for children with special healthcare needs. Increase the ability of the integrated CRS MCO to collect and analyze data to better assess the health needs of their members with a CRS condition from a holistic approach. Streamline the current fragmented health care delivery system, which has caused inefficiencies and led to challenges with care coordination for the families of CRSeligible children. Improve health outcomes. Promote the sharing of information between CRS, acute and behavioral health providers and allow for greater collaboration in designing a treatment plan to address an individual s whole health needs. 17 CMS approved AHCCCS Waiver request in a January 2013 letter that reiterated the goals of this first-of-its-kind state-wide coverage integration for CSHCN: This award approves the state's request to integrate physical and behavioral health services provided to children enrolled in the state's Children's Rehabilitative Services (CRS) program as well as to adults residing in Maricopa County who are diagnosed with a serious mental illness (SMI). The objectives of the integration projects are to reduce the fragmentation of care that these populations currently experience as they navigate the multiple systems of care in order to receive their physical and behavioral health services. The demonstration will test the effect of integrating behavioral and physical health services for the two populations by measuring the improvements in health outcomes for these populations as compared to the state's current structure. 32 Specific Changes Enacted Most notably, the 2013 integration waiver made it possible to consolidate responsibility for all aspects of CRS-enrollees care under one organization. This organization would serve as a managed care organization (MCO) for enrollees, thus aligning financial incentives to promote the delivery of efficient and effective care. A single MCO to manage the program statewide was selected 14

17 through a competitive bidding process, with UnitedHealthcare Community Plan ultimately being awarded the initial five-year contract beginning October 1, As of October 2013, the majority CRS-covered individuals enrolled in a fully-integrated plan are now covered under a single plan that encompasses acute or medical care for their CRS-eligible condition(s), primary care, and AHCCCS-eligible behavioral health services. Likewise, many providers now have only one payer entity to contract with for all AHCCCS- and CRS-covered services for enrollees. Exceptions can occur for members with certain CRS coverage types in which an acute contractor or regional behavioral health authority (RBHA)/tribal regional behavioral health authority (T/RBHA) may be involved with care for acute or behavioral health services, thus requiring a provider to contract with multiple payer entities. 15

18 Chapter 4: Linkages with Other State Funded Programs The Children s Rehabilitative Services program is a vital component of Arizona s system of care for individuals with special health care needs. But a range of other programs for these individuals also play a role in establishing a health care delivery system worthy of Arizona s number one ranking for caring for individuals with intellectual or developmental disabilities. 1 Prior to the 2013 CRS integration, a frequent source of care fragmentation for CRS enrollees arose with the Arizona Long Term Care System (ALTCS). In AHCCCS final proposal to CMS for its section 1115 waiver, two of the four total examples of care fragmentation specifically mentioned in the report stemmed from dual enrollment in CRS and ALTCS. Specifically: A CRS-eligible child enrolled in the ALTCS EPD program is also enrolled with any one of eight different program contractors. A CRS-eligible child enrolled in the ALTCS DD program is enrolled with the Department of Developmental Disabilities (DDD) for long-term care services AND one of DDD s four Acute Care Contractors for acute care services. 13 ALTCS serves AHCCCS-eligible individuals at risk of institutionalization. Consistent with Arizona s long history with managed care for its Medicaid programs, ALTCS employs an integrated managed care approach for its elderly and physically disabled enrollees. Physical (including primary and acute) and behavioral care for these members are integrated. Plans also serve as Special Needs Plans, enabling ALTCS contractors to coordinate care for enrollees dually eligible for Medicare and Medicaid. Over 70% of elderly or physically disabled ALTCS enrollees live at home or within the community and the program has served as a national model for quality, cost efficiency and integration of care. 17 It is perhaps not surprising that United Cerebral Palsy ranked Arizona as the top state for promoting independence among the intellectually or developmentally disabled. 1 16

19 Coverage for individuals eligible for both ALTCS DD and CRS remains somewhat complicated. The AHCCCS waiver to CMS excluded children with CRS conditions that were also enrolled in the ALTCS EPD program, since the acute, behavioral health and long term care provided in the ALTCS program is already largely integrated. Beginning October 1, 2013, ALTCS EPD members who need active treatment for one or more of their CRS medical conditions receive treatment for those conditions through their ALTCS EPD program. If an ALTCS DD enrollee has a CRS-eligible condition, he or she can be referred to CRS for coverage related to those specific health needs. If an individual declines to enroll in CRS, coverage for the CRS-eligible condition may be unavailable under ALTCS. 33 It is feasible that future efforts to improve linkages between these two programs may target the medically and administratively complex interplay between CRS-eligible conditions and ALTCS enrollees other care. 17

20 Chapter 5: Conference Proceedings The Opening the Doors: Solutions to Prepare Your Practice for People with Special Needs conference took place on July 25, 2014 in Scottsdale, Arizona. The conference was hosted by UnitedHealthcare Community Plan and the Arizona Department of Health Services (ADHS), supported by the Title V Block Grant (B04MC21387) provided by the Maternal and Child Health Bureau, HRSA, to the ADHS, Bureau of Women s and Children s Health, Office of Children with Special Health Care Needs. The conference was opened by Sheila Shapiro, Chief Operating Officer for UnitedHealthcare Community Plan, who presented a set of three goals for the event: 1. To learn about the Arizona public policy, behavioral health, and Medicaid integration landscape; 2. To learn about colleagues best practices for working with individuals with special needs and for promoting effective integration with other providers and the larger health system; and 3. To understand and advance the designation of medical personnel as recognized special needs providers. Opening Session With these three goals in mind, attendees heard opening presentations from representatives of ADHS and AHCCCS: Will Humble, Director, ADHS; Beth Lazare, Deputy Director, AHCCCS; Cory Nelson, Deputy Director for Behavioral Health, ADHS. Will Humble began the session by reiterating his agency s ultimate goal: to link general, primary, and behavioral health care to improve public health. ADHS was specifically motivated by 18

21 findings that persons with severe mental illness (SMI) face large disparities in life expectancy versus non-smi individuals (see text box on next page). 34 The goal of the agency was to create a system that integrated care for the entire person in order to improve the care for that entire person. While it may seem logical to structure Arizona s care delivery system in such a manner, the fact that these programs have budgets on the order of tens and hundreds of millions of dollars annually mean that reform efforts will be complex and will involve working with a range of stakeholders. For example, as outlined in the April 2014 Arizona State Health Assessment 35 and the forthcoming Arizona Health Improvement Plan, 36 one major priority Box 3: Life Expectancy for Persons with Severe Mental Illness As mentioned by two speakers during the opening session, persons with severe mental illness (SMI) face a multitude of health-related challenges. Sadly, the life expectancy for persons with SMI in Arizona is some 30 years shorter than non-smi individuals. Some of the challenges related to care for persons with SMI relate to their elevated behavioral health care needs, but other challenges related to preventable, treatable, or manageable conditions also persist. For example, smoking, obesity, and diabetes are all major concerns that contribute to disparities between the SMI and non-smi populations in Arizona. The lack of integration between general, primary care, and behavioral health providers can represent a barrier to patients receipt of integrated, quality health care that may exacerbate this disparity for the state is improved access to care. Broadly defined, access to care involves far more than insurance coverage. It involves getting the right people to the right providers at the right time. A better-integrated system will help to make that vision a reality. The process of realizing those goals will not be easy and will not be without setbacks. But in his remarks, Humble stressed that the roughly 300 Opening the Door in-person and online attendees might consider themselves as early adopters or champions of these principles and goals. With a dedicated group of providers from across the state, it may be more feasible to disseminate best practices, to share barriers and facilitators of integrated care, and to promote the health of all Arizonans through high quality general, primary, and behavioral care. Beth Lazare spoke next and provided some background on the strategic direction that AHCCCS has sought for programs providing care for special needs populations. In the past, this 19

22 meant that general physical care was provided through AHCCCS contracts and contractors, care related to an individual s special needs was provided through the special needs-specific program (e.g., Children s Rehabilitative Services for CSHCN), and behavioral care through the ADHScontracted RBHAs for an individual with SMI, and for general AHCCCS covered behavioral health services. This overlay of programs on top of one another cause fragmentation in the system. This fragmentation made it hard for patients, their families, their providers, and their program administrators to know who is associated with what. Indeed, reducing fragmentation was listed as the first element of the agency s strategic plan: Reduce fragmentation Improve quality Integrate delivery system Lower costs Align incentives A reduction in fragmentation can help foster system integration. No longer can patients simply slip through the cracks because providers are unable or unwilling to communicate. At the health plan level, this can mean that a single entity is accountable to manage the whole health of an individual. At the provider level, it can mean establishing care teams that serve the spectrum of patients needs, rather than being siloed into narrow areas of deep expertise. For CSHCN, the fragmentation meant navigating 3 or 4 plans: CRS, acute care coverage, RBHA, and Medicare (if applicable). Reports from overwhelmed families struggling with the administrative burden of bridging the care received in each system led to the competitive procurement of a single contractor to provide oversight and administer benefits for the spectrum of physical and behavioral care for patients. A stated goal of this consolidated integration was improved outcomes through enhanced case management and care coordination. One area in which AHCCCS has had considerable success relative to the rest of the U.S. in fostering integrated care delivery system is for individuals dually eligible for Medicare and Medicaid 20

23 ( duals ). Of the approximately 130,000 Arizonans dually eligible for both Medicaid and Medicare, some 53,000 have Medicare and Medicaid coverage plans in alignment (i.e., receive insurance coverage through the same plans). AHCCCS estimates that across the entire U.S., there are only approximately 150,000 Medicaid/Medicare dually-eligible individuals with Medicare and Medicaid coverage plans in alignment. This means that fully one-third of all such aligned duals are in Arizona. A study cited by Lazare during the talk suggested that this insurance arrangement is associated with shorter hospital stays, lower readmission rates, and higher utilization of preventive services. Efforts in this area are to be expanded in the current Greater AZ RBHA request for proposals, which seeks to integrate behavioral health into aligned acute plans for duals. Improved care coordination can also entail adopting a more team-based approach to care; having access and the facilities to utilize data at multiple levels: individual patient-level, providerlevel, and administrative plan-level; and ensuring that each level within the system can be recognized and held accountable for its performance. AHCCCS has set expectations for providers to establish new payment modes that ensure these care coordination activities can prosper, but has not delineated a specific model that providers and plans must follow. Moving forward, Lazare described several opportunities for providers to thrive in a more integrated delivery system: by using some of the tools and materials presented at the Opening the Doors conference to open ones practice to persons with special health care needs by embracing electronic health records, getting help through sources such as the Arizona Health-e Connection and/or the Meaningful Use incentive program by thinking broadly about ones practice as a critical part of the patient s care team by getting to know care team partners, including hospitals, behavioral health providers, health plans, RBHAs, and other providers and allies 21

24 by looking to professional associations for technical support to transform business models, practice flows, and more. The third speaker in the opening session, Cory Nelson, echoed many of these themes. Nelson presented statistics to show that mental illness is an extremely common issue, with 1 in 4 Americans having a diagnosable mental illness and approximately 5% having a SMI. The prevalence and cost to treat mental illness has risen substantially over the past 20 years, yet relative to chronic conditions such as diabetes, heart disease, and hypertension, only a relatively small proportion of all persons impacted by mental illness are receiving treatment. Often mental and physical health needs are difficult to differentiate and even more difficult to treat in separate clinics, with Nelson remarking that you cannot treat the head in one clinic and the body in another. A system that integrates behavioral care with general and primary care therefore benefits the patient, the provider (through enhanced patient experience, compliance, and reduced administrative overheard and missed appointments), the state (through streamlined public programs to residents of Maricopa and Greater Arizona), and society (through downstream benefits stemming from changes to the health care system that flow to the broader economy). Nelson closed by offering six major ways in which one person could make a difference, noting that not treating the whole person can result in added long-term costs or poorer outcomes at the system-level. 1. Encourage a culture of taking mental health seriously, from the top down. 2. Have formal and informal policies about workplace conduct when working with patients experiencing mental health issues. 3. Hold a Mental Health Awareness Month or other visible mental health-friendly events/activities and offer educational/informational materials. 4. Understand that it may take a little more time to help a person with mental illness, but the long-term payoff is worth it. 5. Collaborate, either as a network partner for a RBHA that provides integrated behavioral health care or by being open to care coordination efforts with others. 6. Think about the whole person, working to rule out other conditions before ruling in mental health or substance abuse issues. 22

25 The conference then adjourned briefly for attendees to explore the Community Partner Showcase (see list of participating organizations in box 4 and a full description of organizations in Appendix C) before attending breakout sessions. Breakout Sessions Each of the three breakout sessions was led by a practitioner who presented his or her perspectives and expertise working on the front lines to serve CSHCN and to integrate health care across the delivery system. The sessions were repeated twice to allow attendees to hear two of the three presentations. Box 4: Community Partner Showcase Participating Organizations Area Agency on Aging, Region One Arizona Bridge to Independent Living (ABIL)/SpoFit Arizona Department of Health Services Bureau of Women s & Children s Health, Office of Children with Special Health Care Needs Arizona Developmental Disabilities Planning Council Arizona Health Care Cost Containment System (AHCCCS) Children s Rehabilitative Services Multi-Specialty Interdisciplinary Clinics (MSICs) Children s Action Alliance Deaf Access of Arizona DIRECT Center for Independence Family Involvement Center Foundation for Senior Living Hospice of the Valley Institute for Human Development Jewish Family & Children's Service March of Dimes Pima Council on Aging Raising Special Kids Special Olympics Arizona The Arizona Partnership for Immunization (TAPI) The EAR Foundation of Arizona United Cerebral Palsy Foundation UnitedHealthcare Community Plan 23

26 Session A: Kevin Berger, MD, FAAP, FAAHPM, Phoenix Pediatrics, LTD Dr. Berger spoke about the topic of Integration that Works: The Primary Care Perspective. Dr. Berger began by framing the topic from his perspective as a primary care pediatrician. To him, integration can range from the national level (e.g., the National Health System of the UK), to health systems (e.g., Kaiser Permanente), to local HMOs, to individual clinics. These models all require mutual cooperation and communication to provide effective care from multiple sources. For many practitioners, integration is likely to require some element of change or alteration to current practice. Dr. Berger likened this to reacting to seeing the elements of a patient-centered medical home (PCMH) (e.g., accessible, family-centered, comprehensive, continuous, coordinated, compassionate, culturally-competent). While a provider might initially think we already do that, but at some point in considering the details of the specific elements, there is usually the thought that who can afford to implement that?. But this has not stopped many from successfully implementing a PCMH, including Dr. Berger, who notes that his practice was recognized as being an early adopter of PCMH even though in his opinion his practice does not do everything. A key is to think not just about how to establish a medical home, not just about how to survive financially, but also about how to build community relationships to provide care for your patient population (and specifically for children with complex chronic conditions). One answer is a team approach including: nurse coordinator, RN, social worker, chaplain, physician, child life specialist, each working to support the comparative advantages of each team member. Underlying any successful organizational shift, especially one as large as moving towards the creation of a medical home or more integrated care, is aligning the practice culture with the intended change. For example, all providers must be willing and able to care for CSHCN. This can require new processes, routines, or mindsets and does not come without financial risk. Yet the potential 24

27 benefits are many, according to Dr. Berger: efficient use of resources, expanded expertise and competence, establishment of a forum for problem solving, increased patient and family satisfaction, increased professional satisfaction, and enhanced efficiency for families. In spite of these benefits, adopting an integrated or medical home practice model can present financial risks. For example, at one practice Provider Group A served 65% more long-term care patients than Provider Group B. Group A had 21% fewer visits and about 20% lower relative value units (RVUs) per day than Group B. Annualized, this amounted to an $85,000 difference per year per provider in a fee-for-service payment model. Thus the group serving more complex patients ended up earning lower revenue. This can be an awkward incentive system for many, especially pediatricians for whom the head bone is connected to the heart bone. Beyond imbalances in RVUs, Dr. Berger also cited additional challenges to physician productivity when providing care for more complex patients: scheduling challenges, additional personnel, non face-to-face encounters (e.g., care planning, care coordination, medical record review, consultation with specialists, school issues, letters of medical necessity, etc.), and the lack of conversion factors for complexity in the resource-based relative value scale (RBRVS). Even in light of the altruistic reasons many practitioners chose medicine and chose pediatrics, at the end of the day a provider must think like a business person. Running a practice like a business can sometimes mean having to invest in generating data to build early stage ideas into viable products. In his practice, Dr. Berger cites business intelligence via electronic medical record analytics as an example. The types of data available to providers and to payers may differ, and in some cases individuals may not know what information they are missing. Gathering these data can proactively address patient needs and contribute to effective care coordination. 25

28 Care coordination, according to Dr. Berger, is a process that links CSHCN and the families to services and resources in an effort to maximize the potential of the children and provide them with optimal health care. Coordination can be expensive, but if people do not feel supported, it can lead to desperate measures that might mean a family seeks care in a hospital rather than at a primary care office visit, for example. Serving patients with special needs in a coordinated manner requires tailored processes throughout a practice. For example, having front office staff ask about special needs during an initial phone call to ensure that the patient is scheduled for the right type and duration visit. Dr. Berger also mentioned proactively giving patients warm introductions to other providers in his practice so that when he is out of the office or running behind schedule the patient can be seen promptly and by a familiar face. But process change can also mean bringing on extra staff such as an RN case manager or care coordinator for CSHCN, even in light of the financial challenges mentioned above. It is also likely that serving CSHCN will require new and updated documentation procedures to meet the needs of providers, communities, and local resources. Essentially, anything one would expect to do more than once should have its own form (e.g., referral request, therapy request, community resources, etc.). An added benefit of this documentation may be enhanced ability to justify billing audits. Dr. Berger closed with what may be the most important part of serving CSHCN, especially from the provider perspective, strategies for effective communication with patients and families. In addition to stressing the importance of listening to parents and allowing families to verbalize thoughts and concerns, Berger listed three main topics for providers to focus on: What are your goals of treatment? What are your expectations of treatment? 26

29 What are your expectations of the hospital, nurses, therapists, child life, and social workers? Session B: Julia Lesselyong, PsyD, Integrated Geriatric Behavioral Health Associates Dr. Lesselyong spoke about the topic of Integration that Works: The Behavioral Health Perspective. Dr. Lesselyong began by describing a variety of models of integration for behavioral and physical health care delivery, cautioning that the right model will vary depending on practice type and setting. Certain Medicare and Medicaid billing restrictions can make some integration models difficult for some practices. Collaboration: This stage can include screening to determine the need for further investigation (e.g., using a modified inventory to assess depressive symptoms).this stage can be fairly simple and may entail little to establish formal partnerships. Coordination with other providers or offices may be key for this model. Medical-Provided Behavioral Care: This can occur when a behavioral care clinic adds a minimal range of medical or physical health services. This is somewhat uncommon and may require specific workforce types or licensures within the behavioral care office to make possible. Co-Location: The sharing of physical space, often within the same building or complex, can be purposeful or unplanned. Such proximity may facilitate provider-to-provider communication (e.g., elevator rides) and may also make it easier for patients to see both providers. It may also be formalized through organizational policies. One such example cited by Dr. Lesselyong is an obstetrics and gynecology (ob/gyn) practice located in the same building as a behavioral health practice. The ob/gyn clinic served survivors of sexual trauma and occasional crises arose where a 27