CART Model Programs

A Proposal for Enhancing Health Care Delivery Systems for Transition-Age Youth and  Adults with Developmental Disabilities

Submitted to:

The California Department of Health Care Services

By:

Clarissa Kripke, MD, FAAFP
Associate Clinical Professor
Director Developmental Primary Care
Chair, Chancellor’s Advisory Committee on Disability Issues
Associate Editor, American Family Physician
Department of Family and Community Medicine
University of California, San Francisco

Mary D. Giammona, MD, MPH, FAAP
Medical Director
Health Plan of San Mateo

Alan Fox, MPA
Chief Operating Officer
The Arc of San Francisco

Jim Shorter, JD, MBA
Executive Director
Golden Gate Regional Center

Date:
March 2010

Table of Contents

Executive Summary
Introduction
The CART Model Programs Background
What Are Developmental Disabilities?
Historical Background
Demographics
San Mateo County DD Population
San Francisco County DD Population
Medi-Cal Comprehensive 1115 Waiver Proposal
Statement of Need
A Complexity of Needs
Structural Deficits in the Health Care System
Lack of Patient Support
CART Model Programs Proposal
Program Goals
Eligibility Criteria
Program Components
Program Structure
Evaluation
Dissemination and Program Expansion
CART Model Program Pilots Financing
Funding Sources
Funding Mechanisms
Proposed Budget
Qualifications and Readiness
Summary and Conclusions
Attachment A: The CART Executive Planning Group

Executive Summary

Introduction

Transition-age youth and adults with developmental disabilities are a high cost population who require enhanced systems of care to address their complex health care needs.  The CART Model Programs Executive Planning Group (CART-EPG) has convened since 2006 to develop strategies to achieve such model systems of care.  Specifically, the CART EPG focuses on developing and improving the following facets of the health care delivery and support system for individuals with developmental disabilities:

• Clinical services for primary care, consultation and assessment;
• Advocacy for patients who need support to access care;
• Research in population-based health surveillance and health services delivery;
• Technical assistance for clinicians at the point-of-care, and Training to ensure an adequate workforce.

To achieve desired outcomes in these domains, the CART-EPG has developed a CART model program, which it seeks to pilot in San Mateo and San Francisco Counties.  This model program aligns with the goals of the California Department of Health Care Services (DHCS) as it seeks to renew a comprehensive 1115 Medi-Cal waiver. 

The Need for Enhanced Systems of Care

Serving the health care needs of transition-age youth and adults with developmental disabilities presents a complex set of challenges.  Not only do individuals with developmental disabilities have significant health disparities compared with the general population, but they also have communication and cognitive challenges that often limit their ability to identify and articulate their health care needs; to make health care decisions; and to manage their own care.  Patients with developmental disabilities also often have difficulty with the skills required to access care in most doctors’ offices. 

To address these challenges, a system of care designed for transition-age youth and adults with developmental disabilities must place fewer demands on patients and their caregivers and provide front line health care providers with more support.  The current health care system for adults, however, presents structural deficits that severely limit its ability to meet these needs, including lack of trained clinicians, lack of regularly scheduled assessment and care, lack of case management and coordination among provider teams, insufficient reimbursement, and more.  These challenges are particularly problematic for transition-age youth who move between child and adult health care, school-based, and community-based service systems. Critical information about a person’s baseline behavior and function can be lost, clinicians and caregivers are too often unprepared, and gaps in funding, care, or service can compromise health.  

At the same time, demographic and political changes – including increasing longevity among this population and increasing emphasis on deinstitutionalization – have led to greater need and demand for high-quality health care services for transition-age youth and adults with developmental disabilities.  Without significant improvements to the health care system – specifically, an organizational framework, strong leadership, and a reimbursement structure to enable the development of team-based approaches to care delivery – patients with developmental disabilities will effectively be denied the services and quality of care they need maximize their long-term health and function.

The CART Model Programs Proposal

To address these unmet health care needs, the CART-EPG has developed a model program that it seeks to pilot in San Mateo and San Francisco Counties over a five-year period.  The goals of this program are:

• To improve the health status of CART Model program members including measures of wellness, function and quality of life, and
• To improve the responsiveness of health care systems to the needs of individuals with DD including:
  • the ability to get behavioral services quickly;
  • the effectiveness of behavioral health services;
  • the effectiveness of care coordination services;
• the quality of preparation for post-transition care from the patient’s perspective, including transitions from child to adult services, to and from different levels of care, in caregivers, and in programs accessed;
• the percentage of CART Model Program members who receive a yearly comprehensive health and functional assessment; and
• the level to which functional status is improved or maintained, including activities of daily living and instrumental activities of daily living.

To achieve these goals, the CART model programs incorporate the following four integrated pillars:

• Enhanced medical homes
• Centers of Excellence (COE) in developmental primary care
• Yearly health assessments
• Health advocacy services

These pillars create an organized system of care to not only provide an enhanced level of service to individuals with developmental disabilities, but also to build and sustain capacity for adequately serving the developmental disabilities population over the long term. 

The CART-EPG recommends that patients enrolled in the CART model program pilot be enrolled in one health plan if possible. It is proposed that the pilot of this model include San Francisco and San Mateo county Medi-Cal members.  The challenge of a multi-county plan for members with developmental disabilities, given the political, systems, and operational challenges that currently exist is recognized.  This will be explored to the extent feasible.  However, enrollment into a single plan would maximize efficiency and coordination in the care of this vulnerable population. The CART-EPG suggests that any concerns raised regarding the principle of client self-determination in directing enrollment in a single plan would be more than offset by an improvement in health outcomes.

It is expected that the pilot in San Mateo and San Francisco Counties will be evaluated for its effectiveness in achieving the CART model program goals.  Evaluation results will be disseminated to broad local, state, and national audiences, as well as incorporated into program expansions in additional counties throughout the state. 

Program Financing

The CART-EPG seeks funding from the California Department of Health Care Services (DHCS) for the development and implementation of clinical services and care coordination for transition-age youth and adults with developmental disabilities residing in pilot counties.  Specifically, funding is requested for enhanced Medi-Cal health services such as enhanced medical homes, patient-based consultation and assessment services from a Center of Excellence, yearly health assessments, and health advocacy services, as well as for the development and administration of these services.

To finance these enhanced services, the CART-EPG recommends that DHCS reserve $5 million from the excess funds associated with the closure of Agnews Developmental Center and the care of its former residents moved into Santa Clara, Alameda and San Mateo Counties (e.g. money being reclaimed from capitation overpayments already paid out but not yet paid back to DHCS).  These dollars have been allocated to services for individuals with developmental disabilities and as such should be reinvested to improve their care, rather than redirected for other purposes.  Such funding would provide start-up resources for the CART model program to build infrastructure and regional capacity for San Mateo and San Francisco Counties in its first year.

Additionally, the CART-EPG recommends that DHCS pursue additional financing strategies for the following years of the pilot program, including through the exploration of intergovernmental transfers supported by local counties, the University of California hospital system, and Medi-Cal managed care health plans. 

The CART-EPG recommends that the first-year and following-year funding be made available to support the CART model program pilot through add-on capitation payments to health plans for their enrolled patients with developmental disabilities.  Health plans would use the funding to identify and contract with appropriate local providers to create the capacity needed to serve the population of transition-age youth and adults with developmental disabilities in accordance with the CART model programs model. 

Qualifications and Local Readiness

At a minimum, for San Mateo County residents, several factors demonstrate how and why the Health Plan of San Mateo (HPSM) is uniquely positioned to serve as the primary health plan for CART Model Programs pilot, including HPSM’s:

• Experience as a County Organized Health System, with mandatory enrollment and experience serving persons with developmental disabilities;
• Status as Medicare Advantage Special Needs Plan (SNP), to coordinate services across the Medi-Cal and Medicare programs;
• Experience serving beneficiaries with developmental disabilities through the closure of Agnews Developmental Center; and
• Focus on long-term care integration, to complement the enhanced health care services expected under the CART model program.

Additionally, locating the CART model program pilot in San Francisco and San Mateo Counties will draw upon local resources and expertise that are demonstrated through the following:

• The passion and commitment of local providers, advocates, and stakeholders to serving the population of transition-age youth and adults with developmental disabilities, as demonstrated through the establishment of the CART-EPG;
• The availability of UCSF Department of Family and Community Medicine to provide clinical leadership and assistance in capacity development as the COE, demonstrated by its development and support of its Office of Developmental Primary Care;
• The availability of local community resources, including Golden Gate Regional Center and The Arc of San Francisco, to provide support and guidance during the pilot implementation; and
• The existence of local clinics developing expertise through specializing in the care of adult patients with developmental disabilities, including the Family Health Clinic at San Francisco General Hospital, San Mateo Medical Center’s Esperanza Clinic, and San Mateo County Behavioral Health and Recovery Services’ Puente Clinic.

Introduction

The CART Model Programs Background

Transition-age youth and adults with developmental disabilities are a high-cost population who require enhanced systems of care to address their complex health care needs.  The CART Model Programs Executive Planning Group (CART-EPG) has convened since 2006 to develop strategies to achieve such model systems of care.  Specifically, the CART-EPG focuses on developing and improving the following facets of the health care delivery and support system for individuals with developmental disabilities:

• Clinical services for primary care, consultation and assessment;
• Advocacy for patients who need support to access care;
• Research in population-based health surveillance and health services delivery;
• Technical assistance for clinicians at the point-of-care, and Training to ensure an adequate workforce.

The CART-EPG includes local experts and thought leaders who are based in the San Francisco Bay Area and who represent a broad cross-section of health care and social service providers, advocates, and patient representatives, including Golden Gate Regional Center, University of California at San Francisco Department of Family and Community Medicine Office of Developmental Primary Care, The Arc of San Francisco, and the Health Plan of San Mateo, to name a few.  A complete listing of CART-EPG members is included as Attachment A. 

This document represents the results of the CART-EPG analysis and strategic planning in the conceptualization of a CART model program for transition-age youth and adults with developmental disabilities, and it offers a proposal for developing and pilot testing CART model programs in San Mateo and San Francisco Counties under the comprehensive 1115 Medi-Cal waiver proposal the State of California is expected to submit to the federal government in September 2010. 

What are Developmental Disabilities?

Developmental disabilities (DD) are complex disabilities that begin during childhood, are expected to continue indefinitely, and constitute significant functional limitations in three or more areas of major life function including:

• capacity for self-care
• capacity for self-direction
• capacity for economic self-sufficiency
• capacity for independent living
• learning
• receptive or expressive language
• mobility
  [1],[2]

Developmental disabilities include conditions such as intellectual disability (formerly mental retardation), autism, cerebral palsy, and epilepsy. Most people with DD have multiple chronic medical problems apart from their disability. About 20 percent are on medications that modify their behavior.[3],[4],[5]

Historical Background

Forty years ago, individuals with DD were commonly placed in state institutions where their life expectancies were limited. As a result of policy changes in the 1970s, legislators started to close institutions and support people in family or group homes.[6] Due to advances in medicine and improvements in the conditions in which people with DD live, their life expectancies now approach that of the general population.[7] Today, less than two percent of people with DD in California live in state developmental centers. The law and service systems are struggling to catch up to this new reality.

Demographics

Compared to the federal government, the State of California has a narrower definition of DD.  Through the Regional Center system, the California Department of Developmental Services (DDS) serves approximately 225,000 individuals (0.6 percent of the population).[8]  About 40,000 are transition-age youth (14-21 years).  About 90,000 are adults over age 21.  This represents 42 percent of DDS clients.  About 40 percent of DDS clients are Caucasian, 33 percent Hispanic, 10 percent Black and 6 percent Asian.  Approximately half of adults live with their families, 20 percent in community care group homes (board & care homes), and 17 percent in their own homes with supports.  About 2 percent live in developmental centers (state institutions).  These non-family living situations are funded by the State through DDS.  About 7 percent of adults live in skilled nursing homes or intermediate care facilities (group homes with skilled nursing) funded by Medi-Cal. 

The majority of patients with DD who are served through the Regional Center system have Medi-Cal coverage, and most children and transition-age youth with epilepsy or cerebral palsy also have health care coverage through the California Children’s Services (CCS) program. For the adult population, it is estimated that approximately half have dual coverage through both Medi-Cal and Medicare.

Over the past ten years, despite narrowing the definition of DD, there has been a significant increase in the number of people with DD in California. From 1997-2007, the enrollment of individuals with most conditions increased only slightly. However, the number of people with autism served byDDS grew by 321 percent. Since some people with autism spectrum disorder are not eligible for Regional Center services, other systems such as the mental health system are also struggling to develop effective systems of care for this rapidly growing population.[9]Currently, most individuals with autism are children. People with autism typically have a normal life expectancy. In the coming decade, thepopulation of adults with autism is expected to increase dramatically.[10]

San Mateo County DD Population

Data from January 2010 reveal that 2,423 individuals with DD participate in the Medi-Cal program in San Mateo County through the Health Plan of San Mateo.[11] Of those, almost 74 percent, or 1,785 are age 16 or older.  This is divided into 104 individuals who are below the age of 18, and 1,681 who are 18 or older. 

Of the age 18 and older population, approximately 52 percent (872 individuals) also have Medicare coverage, and 70 percent of those individuals (609 individuals) have Medicare coverage through HPSM’s Medicare Advantage Special Needs Plan (SNP) line of business, HPSM CareAdvantage. 

San Francisco County DD Population

Because San Francisco does not have a Medi-Cal County Organized Health Plan (COHS) or a Medicare Advantage Special Needs Plan (SNP), much less information is available to characterize the population, their service needs, and their health care utilization patterns.  COHS plans have full access to Medi-Cal and statewide hospital utilization data for their mandatorily enrolled members.  They are also mandated to coordinate with their local regional center in the management of care for their jointly managed beneficiaries.  However, fee-for-service Medi-Cal providers enjoy no similar interagency data linkage and sharing agreement.  While the state collects detailed information on service need characteristics and health care utilization, the data are not readily available to policy makers, researchers, advocates or service providers. 

Based on the best information that is currently available, San Francisco has approximately 1500 adult residents who are regional center clients and an additional 50 to 100 transition-age youth.[12]  It is believed that the vast majority of regional center adults residing in San Francisco are enrolled in fee-for-service Medi-Cal, and less than 200 enrolled in managed care.  Additionally, approximately 50 percent of these adults are believed to be dually eligible for Medi-Cal and Medicare.  Because the majority of Golden Gate Regional Center’s group homes that serve more complex clients are in San Mateo, it is not certain if data from San Mateo can be extrapolated to San Francisco. 

Medi-Cal Comprehensive 1115 Waiver Proposal

Under California state legislation ABx4 6, the Department of Health Care Services (DHCS) is committed to pursuing a comprehensive section 1115 Medi-Cal waiver that will “restructure the organization and delivery of health care for populations that include the most medically vulnerable; high cost Medi-Cal beneficiaries with complex chronic conditions, co-morbidities, and the highest needs for on-going health care.”[13]  As one strategy for achieving this goal, DHCS seeks to promote organized delivery systems of care that will focus on the following components:

• Provider networks that meet beneficiary needs, including through medical home assignment;
• Care management and care coordination;
• Managing and monitoring service utilization; and
• Member supports.

The CART-EPG strongly supports this effort to promote organized systems of care and its component pieces.  Moreover, we believe that this approach provides a sound framework for implementing CART model programs for beneficiaries with DD, who clearly represent an example of the medically vulnerable, high-cost subset of Medi-Cal beneficiaries with complex and ongoing health care needs that the 1115 waiver seeks to address.

Statement of Need

Transition-age youth and adults with developmental disabilities are a high cost population who require enhanced systems of care to address their complex health care needs in the community.  This is particularly true as most institutions have been closed and as individuals with DD live to older ages.  Pediatric health care providers, families, and regional centers can no longer compensate for the structural deficits that exist in the current health care system for adults.  A close examination of this population’s needs, as well as an assessment of how the current system fails to meet those needs, provides the foundation of this proposal. 

A Complexity of Needs

Transition-age youth and adults with developmental disabilities present a complex set of challenges to health care providers.

To begin, research shows that patients with DD experience health disparities across a number of domains, including fractures, skin conditions, poor oral health, respiratory disorders, obesity, and gastrointestinal disorders.[14],[15]  In addition, specific conditions are associated with high rates of medical complications.  For example, individuals with Down Syndrome have high rates of associated conditions like cardiovascular disease, respiratory infections, diabetes, and obesity, as well as less common conditions related to orthopedic anomalies, congenital heart defects, and thyroid disease. People with DD also have higher rates of psychiatric and behavioral illness than the general population, including anxiety disorders, psychotic disorders, and personality disorders.[16]

In addition to health disparities and higher-than-average clinical needs, most people with DD have communication and cognitive challenges that limit their ability to identify and articulate their health care needs; make health care decisions; and manage their own care.  Patients with intellectual disabilities, in particular, frequently have difficulty interpreting the significance of the sensations in their body.  These individuals may not be able to accurately localize or alert caregivers to pain they are experiencing either verbally or through pain behaviors such as moaning, grimacing or clutching the area that hurts.  As a result, diagnosing pain is often dependent on direct observation or alternate methods for collecting or confirming the accuracy of a medical history.  Without regular screening and assessment by trained clinicians, and patient and caregiver education, illness can easily go unrecognized until advanced stages.  And even when patients’ health care needs are adequately identified and treatment is provided, patients with DD need help in effectively monitoring treatment, compliance, medication adherence and self-care regimens. 

Patients with developmental disabilities regularly have difficulty with the skills required to access care in most doctors’ offices.  For example, many people with developmental disabilities have difficulty waiting, remaining calm in unfamiliar settings or with unfamiliar people, and tolerating changes in their routine.  Those with significant intellectual disabilities often do not understand the purpose and benefit of physical exams and procedures and may not cooperate.  Others who lack mobility require special equipment and trained staff to assist with transportation, positioning, attending to comfort and safety, getting fully undressed, and safely transferring onto an exam table.  Challenging behaviors are also commonly seen among people with DD, especially those with autism and severe to profound intellectual disabilities;[17] while these can often be addressed with desensitization protocols, visual supports, and patience, medical stabilization or sedation may be necessary, even for routine preventive care such as dental, pelvic, and rectal exams and blood draws and immunizations.[18]

While seniors and other persons with disabilities can share some of these challenges with accessing medical care, transition-age youth and adults with DD are unique.  When illness or aging causes complex disability, the focus of health care typically shifts to palliation.  In contrast, since the cause of their disability is not a progressive medical illness, people with developmental disabilities can live, learn, and grow with their disability for many decades.  The approach to health care that is required is consequently very different. 

Structural Deficits in the Health Care System

A system of care designed for transition-age youth and adults with developmental disabilities must place fewer demands on patients and their caregivers and provide front line health care providers with more support.  In response to the complex needs described above, however, the current health care system presents an array of structural deficits that severely limit its ability to provide appropriate care for this vulnerable population.  These deficits include: 

• Lack of clinicians who are knowledgeable and skilled in the treatment of adults with DD.  Health care providers for adults lack training, experience, and ease in treating transition-age youth and adult patients with DD.  In people with DD, common medical problems often present in unusual ways, and people with DD develop uncommon medical problems with which many physicians are unfamiliar.  This lack of training and skill among health care providers arises from many historical factors, including the early mortality previously in this population, history of residence in institutional versus community settings, and the absence of structured training programs in medical education curricula for the treatment of transition-age youth and adults with DD.  Increasing longevity, combined with deinstitutionalization, has generated an increasing need to fill these gaps in training and expertise. 
   
• Lack of regular health assessment and care.  Numerous studies have demonstrated the value of regular health assessments in the care of patients with DD.[19], [20]  However, the adoption of this practice remains limited in health care settings.  Insurance carriers often fail to cover the cost of annual assessments, and providers tend to focus on acute concerns that drive the need for appointments in the first place, rather than conducting regularly-scheduled comprehensive reviews.  Annual surveillance is key to prevention and earlier diagnosis of acute health care problems.
   
• Lack of coordination among provider teams.  Because patients with DD often require services from a wide range of health and social service providers, specialty areas, and sites, a significant level of interdisciplinary care management is required among provider teams to ensure that patients receive appropriate, coordinated, and non-duplicative care.  Effective collaboration requires close working relationships between health care professionals, direct caregivers, and an array of public and private agencies.  At the same time, reimbursement rates do not support this level of care coordination under the current system, and few providers have the practice model, staffing, scheduling, infrastructure and channels to engage in such collaboration. 
   

This lack of integration is particularly problematic for transition-age youth and adults with DD during actual periods of transition.  People with developmental disabilities are particularly vulnerable during health care transitions that occur when youth leave child-oriented systems of care to adult-oriented ones, when there are changes in residence or caregivers (which occur too frequently), and when the intensity of need changes.  Without specific preplanning, critical information about a person’s baseline behavior and function can be lost; receiving clinicians and caregivers can be unprepared; and gaps in funding, care or service can compromise health.  Unfortunately, managed transitions rarely take place.  Instead, patients and their caregivers are often left to struggle on their own with little direction on how to transition their care and often with dangerous disruptions in continuity and service.

• Insufficient reimbursement. The complexities of providing care to patients with DD often require longer exam times, coordination with multiple care teams, specialized equipment, trained office staff, and tailored protocols that are not required for the care of people without DD.  Unfortunately, reimbursement systems have failed to account for these enhanced services for patients with DD, leading to insufficient reimbursement that does not fully cover the costs of care.  As such, providers must often choose between serving these patients at a net loss or not serving them at all. 

  For beneficiaries with DD who are enrolled in Medi-Cal health plans, this lack of sufficient reimbursement is driven, in large part, due to the absence of risk adjustment in health plan payment; the high-cost nature of caring for beneficiaries with DD is not reflected in the payments plans receive.  As a result, plans do not have the resources to adequately care for this population, and they are unable to pass on adequate payments to their contracted providers.  Furthermore, plans without mandatory enrollment have little incentive to take on the management of their care.  On the contrary, such plans may even engage in enrollment avoidance strategies to minimize their risk exposure for members with DD.
   

• Limited availability of services in places where patients with DD live and reside.  As noted above, many individuals with DD have functional and cognitive limitations that make transportation and mobility challenging, particularly without assistance.  For patients with severe conditions and/or complex co-morbidities, these needs are exacerbated.  In addition, specialized personnel, services and equipment may be necessary to provide appropriate treatment for this population, but the availability of such services or equipment is usually limited, with many provider offices unable to offer such tailored care.  Delivery of services in home and local community settings – including through telemedicine – provides one solution for addressing these challenges, but few practices are structured to provide home visits or to offer mobile care or telemedicine services. 
   
• Lack of clear policies regarding consent, medical stabilization, and sedation.  Protocols for informed consent for procedures such as medical stabilization and sedation are poorly defined and cumbersome, and providers often struggle to provide care with limited resources or direction.  This is challenging for many reasons, including:
  • Lack of support for decision-making among adults with intellectual disabilities to provide informed consent
  • Provider failure to fully assess intellectual capacity of patients with DD who may be competent for some or all medical decisions
  • Provider assumptions about intellectual capacity based on patient appearance, inability to respond promptly, or to produce clear speech
  • Absence of surrogate decision makers,[21]^,[22]such as relatives, individuals with power of attorney for health care, or conservators among a large proportion of adults with DD
  • Limited access to patient medical records for family members and professional caregivers who do not have a legal right to access information, due to existing confidentiality laws

  In the face of these challenges, practical policies and procedures must be developed to facilitate access for patients with DD while respecting autonomy.
   

• Lack of research and proven care guidelines.  The population of individuals with DD is difficult to study for several reasons.  To begin, there does not exist any state or nationwide public health surveillance on this population; instead, patients with DD are often grouped within the broader category of seniors and persons with disabilities – a category dominated by individuals who exhibit a wide range of characteristics that diverge from developmental disabilities.  Patients with DD also represent a broad cross-section of clinical conditions and severity that are not often captured in research.  They reside in a wide range of settings, such as in family homes, group homes, and institutional settings, which are believed to have differential impacts on health outcomes.  In addition, rapid changes in the demographic and health care profile of this population are continuing, with higher prevalence of autism and increasing longevity among people with DD creating new populations whose health care needs and trajectories are not well understood.  All of these factors together contribute to a lack of comprehensive and authoritative research on this population, including with respect to best practices and proven care guidelines, that hinder the delivery of optimal care.[23]

Lack of Patient Support

Further exacerbating the ability of patients with DD to obtain high-quality health care are inadequate family and community support systems to help patients navigate often-complex health systems, particularly as patients enter adulthood and continue to age.  Individuals with DD usually require substantial support to access health care, arrange funding for care, schedule and arrange transportation to health care appointments, identify appropriate care providers, navigate between multiple provider offices, and more.   The complexity of the logistics often overwhelms family and caregiver resources.

Caregivers play a large role in protecting and promoting the health of individuals with DD.  Caregivers can help ensure that treatment is provided at an early stage.  Qualified caregivers can be trained to be good observers, to keep accurate records, and to identify signs and symptoms of illness such as changes in behavior, function, or vital signs.  Many illnesses such as aspiration pneumonia, challenging behavior, and pressure sores, for example, can be reduced significantly through patient and caregiver training and support. 

While people with DD are children, their parents are usually their advocates.  As they age into adulthood, in some cases, parents can continue to provide substantial support to their adult children.  However, parents’ ability to provide support diminishes because they also age, become ill, and eventually die.  Few people with DD have children or spouses.  Siblings tend to have caregiving responsibilities for their parents and their own children as well.  In contrast, most seniors have adult children or spouses who can provide care during times of illness. This support generally does not lessen as the seniors age, particularly if it is provided by adult children.

Beyond parents, support for people with DD may also be provided by a case manager or paid caregivers.  However, access to these types of supports is strained due to eligibility limitations, under-financing, and workforce retention issues.

CART Model Programs Proposal: Enhanced Systems of Care for Patients with Developmental Disabilities in San Mateo and San Francisco Counties

To address the urgent and significant need for improved systems of care for patients with developmental disabilities, the CART-EPG proposes to implement a five-year pilot program in San Mateo and San Francisco Counties to better serve this vulnerable population.  The goals of this pilot are to improve local capacity to provide appropriate care management, care coordination, and health service delivery to the adult populations with DD in these two counties.  In addition, we seek to evaluate the success of this model program to determine its effectiveness in achieving the overall CART program goals.  Demonstration of success would further provide support to expand the CART model programs to other organized delivery systems throughout the state.

Program Goals

The goals of the CART model programs include the following:

• To improve the health status of CART Model program members including measures of wellness, function and quality of life, and
• To improve the responsiveness of health care systems to the needs of individuals with DD including:
• the ability to get behavioral services quickly;
• the effectiveness of behavioral health services;
• the effectiveness of care coordination services;
• the quality of preparation for post-transition care from the patient’s perspective, including transitions from child to adult services, to and from different levels of care, in caregivers, and in programs accessed;
• the percentage of CART Model Program members who receive a yearly comprehensive health and functional assessment; and
• the level to which functional status is improved or maintained, including activities of daily living and instrumental activities of daily living.

Eligibility Criteria

In this pilot phase, the CART-EPG proposes to apply the following criteria for inclusion:

• Diagnosis of a developmental disability
• Age of 16 or older
• Eligibility for full-scope Medi-Cal
• Enrollment in a Regional Center
• Residency in San Mateo or San Francisco County

Furthermore, we recommend that dual eligible beneficiaries be excluded from this pilot, unless they are enrolled in the Health Plan of San Mateo’s Medicare Advantage Special Needs Plan.  Until greater coordination can be achieved in managing both Medicare and Medi-Cal benefits for dual eligible members system wide (as seen at HPSM), the ability of the CART model program to improve care for these members will be limited.  

It is expected that approximately 2200 to 2400 total patients will be included in this pilot at any one time. 

Program Components

A CART model program encompasses a broad vision for improving systems of care for transition-age youth and adult patients with DD, not only within the health and social service delivery systems, but also with respect to the public health and public policy environment in which these systems operate.  This vision is embodied in the following four pillars of the CART model program:

• Enhanced medical homes.  The CART-EPG envisions the development of enhanced medical homes as primary care practices that provide an enhanced level of service to a cohort of CART patients.  Their services will be designed to eliminate the common financial, structural, and procedural barriers to providing quality health care that exist under the current system.  Their services will be supported by additional capitation funding that adequately reimburses offices for providing enhanced care services, including longer appointment times, care coordination, participation in interdisciplinary team meetings, expedited response times and shared information with other parts of the system.  Enhanced medical homes will also develop the capacity to deliver health care services in home and community settings as needed, particularly for the most complex cases.  The CART model program will reimburse providers for the time and resources needed to provide care in these settings to better meet patients’ needs.
   
• Centers of Excellence (COEs) in developmental primary care.  A major component of the CART model is the development of Centers of Excellence (COE) in developmental primary care.  While the COEs may provide some primary or specialty care, their main role will be to serve as the local or regional resources for providing consultation, assessment, and technical assistance to the enhanced medical homes, health plans, health assessment teams, specialty providers, and health advocates in their regions.  For example, COEs will provide patient-based consultation for services such as dentistry, psychiatry, speech therapy, augmentative and alternative communications, behaviorism, sedation, and anesthesia, where specialty training and/or equipment is needed to treat patients with DD.  COE services will help address the existing deficits in provider competency and build the capacity of local health care providers to deliver high-quality care to transition-age youth and adult with DD.  COEs will also manage regional health care registries to track health care information about all of the CART model program patients in the region.  Data collected through yearly health assessments will be loaded into the registry and analyzed by the COE to gain a clearer understanding of patients’ health status and health care needs.  COEs will use their findings to identify gaps in services and engage in strategic planning for their correction. 
   
• Yearly health assessments.  Patients with DD participating in the model programs will receive yearly health assessments that are standardized, comprehensive assessments to be conducted by experienced developmental disability nurse practitioners or comparably trained personnel.  These assessments will provide a reliable and comprehensive database for health surveillance, quality assurance and quality improvement.  They will support clinicians in enhanced medical homes with collecting and organizing detailed information.  Responses on the assessment can trigger recommendations for the patient’s health care team or referrals to the consultation and assessment team or regional center.  They will help the system identify the unmet needs of individuals. 
   
• Health advocacy services.  Health advocacy services are designed to provide patient, family, and caregiver support to enhance their capabilities for addressing patients’ health care needs and interacting with the health care system.  Specifically, health advocates will provide training on how to recognize when medical attention is needed, how to make and document health related observations, and how to implement health care plans. They may also provide direct support to patients when necessary, including through assistance in scheduling and arranging for transportation and attendance during health care appointments.  Further, they will provide additional supports before and after transitions from child to adult care settings, during transitions to different levels of care and when there are changes in primary caregivers.

It is expected that these four pillars will be implemented in an incremental fashion, given the availability of funding over five years.  Initial emphasis in the first year of operation will be placed on:

• Increased care coordination through a designated enhanced medical home within each county;
• Availability of and contracting with a specialist in developmental primary care from an emerging COE to provide patient-specific consultation, assessment, and technical assistance;
• Development and validation of a yearly health assessment tool; and
• Establishment of a health advocate at the designated enhanced medical homes.

Expansion of service availability and capacity will take place as additional funding becomes available.

Program Structure

The CART-EPG recommends that all beneficiaries participating in the pilot program – whether they reside in San Mateo or San Francisco County – be enrolled in one health plan, to the extent allowable under the provisions of the 1115 waiver.  Enrollment of all beneficiaries with DD in one health plan within a geographic area will enable several benefits, including:

• Assurance of care coordination and care management for this high-need population, particularly in comparison to beneficiaries with DD who remain in fee-for-service systems;
• Availability of a critical mass of patients within a single health plan for which to develop an adequate range of services;
• Development of focused expertise within the health plan and increased efficiency in service coordination, management, and delivery;
• Enhanced collaboration among key players within a geographic area, including the single plan, the COE, the regional center, providers, and advocates; and
• Increased alignment with and responsiveness to the Regional Center model, which only includes one center within a geographic area.

The CART-EPG suggests that any concerns regarding the principle of client self-determination in directing enrollment in a single plan would be more than offset by an improvement in health outcomes.

At the same time, the CART-EPG understands the many political, systems, and operational challenges that exist in enabling such a program structure.  An alternative could be to apply mandatory enrollment within a single plan in each county – i.e. San Francisco residents could be mandated to enroll in the public health plan of San Francisco – to at least maximize efficiency and coordination at the county level, if not the regional level. 

Lastly, if necessary, the CART-EPG is prepared to work within the existing enrollment structure under the CART model program pilot. Beneficiaries in San Francisco could still benefit from the establishment of a local enhanced medical home and its resident health advocate, as well as the development of regional capacity through the COE, even without enrollment in a local or regional health plan.  If this alternative is utilized, however, the CART-EPG recommends that all funding for this pilot be directed to HPSM to ensure adequate funding of the regional capacity development efforts that will benefit both counties. 

Evaluation

Evaluation is critical for measuring the effectiveness of the CART model program pilots in achieving their goals.  The CART-EPG envisions a multi-faceted evaluation that includes one or more of the following components, based on the level of funding available:

• Key informant interviews
• Patient/family member/caregiver satisfaction surveys
• Provider capacity assessments and provider satisfaction surveys
• Analysis of health outcomes data, including rates of hospitalization, emergency room usage, and institutionalization
• Analysis of health services utilization, including yearly health assessments, dental services, psychiatric services, preventive screenings, home and community-based service delivery, and more

To the extent possible, this evaluation will incorporate changes occurring in the CART model program as it evolves over the five-year pilot.  It will also seek to compare the status of major indicators prior to and upon completion of the five-year pilot to assess the impact of the pilot on the local health systems.

Dissemination and Program Expansion

Findings from the evaluation will contribute to an evidence base that can be shared with other stakeholders and interested parties through a broad-based dissemination effort that can include publication of articles in peer-reviewed journals; presentation of findings at local, state, and national conferences; information sharing with statewide groups including meetings of Medi-Cal Managed Care Medical Directors and Regional Center Directors; and sharing of policy recommendations with state policymakers, legislators, and other county and state organizations to inform future health system reform. 

It is expected that the findings will generate interest in expanding the CART model to additional counties throughout California.  Existing Medi-Cal managed care plans and other organized delivery systems that arise out of the comprehensive 1115 Medi-Cal waiver, in collaboration with local Regional Centers and patient advocacy and assistance groups, could serve as the vehicles for promulgating the success of this model across the state.

CART Model Program Pilots Financing

The broad-based and multi-faceted nature of the CART model requires significant financial contribution from multiple sources to ensure that all the components are implemented in a coordinated manner.  This proposal focuses on those components for which the CART-EPG believes Medi-Cal funding is appropriate and available, as detailed in the Funding Mechanisms section below. 

Funding Sources

To support the CART model program pilots in San Mateo and San Francisco Counties, the CART-EPG requests that the California Department of Health Care Services (DHCS) provide funding from the following sources.

Year 1

When news about the closure of Agnews Developmental Center was announced, DHCS partnered with the California Department of Developmental Services (DDS) and local health plans to develop systems for managing and financing the care of individuals transitioning from Agnews to community settings.  DHCS and DDS agreed that plans should receive enhanced, cost-based reimbursement for any care provided to Agnews residents under plan management, and they budgeted and reserved funds accordingly. 

Upon reviewing ongoing budget issues at the state level, and also reviewing plans’ actual experience in caring for former Agnews residents, DHCS has revised the types of expenditures it will reimburse, such that 1) plans are being required to repay DHCS for capitated dollars already distributed to them for the care of these former Agnews residents – a total amount estimated at approximately $5 million, and 2) budgeted dollars for the care of former Agnews residents are under consideration to be redirected to other non-related budget areas.

The CART-EPG believes that these dollars have been allocated for services to individuals with DD and as such should be reinvested to improve their care, rather than redirected to another purpose.  As such, it requests these funds to provide start-up resources for the CART model program to build infrastructure and regional capacity for San Mateo and San Francisco Counties in its first year. 

Year 2 and Beyond

Given the anticipated limited availability of funding remaining to be returned from the plans in subsequent years for former Agnews residents’ care, the CART-EPG recommends that DHCS explore several intergovernmental transfers (IGTs) to draw down additional federal dollars to support the CART model program pilot and CART program expansion in future years.  These include:

• County-sponsored IGTs.  Counties regularly provide funding for IGTs that direct Medi-Cal dollars to local health and hospital systems, particularly when local public hospitals stand to benefit.  The CART-EPG is currently reaching out to counties to gauge their support for sponsoring IGTs.
   
• Federal match of University of California (UC) expenditures.  As a public entity and a major health care provider, the UC system could sponsor an IGT that could be channeled back into the system through negotiated payments directly from DHCS or through local health plans.  Since it is anticipated that the UC system would be the site of a number of potential Centers of Excellence for people with DD, the CART-EPG has begun to explore this option with key players within the UC system.
   
• Public health plan dollars.  Public health plans – to the extent that DHCS identifies such entities as eligible for IGT participation – could also provide funding to support an IGT to draw down additional federal dollars.  Such plans could even partner with non-public entities such as commercial health plans, or private hospitals or FQHC clinics that could serve as enhanced medical home sites to raise the necessary funds to support the IGT.

The CART-EPG will update DHCS on any progress made in its outreach efforts with potential IGT sponsors. 

Funding Mechanisms

The CART-EPG recommends that DHCS use the initial and follow-up year funding to provide enhanced capitation payments to HPSM and other Medi-Cal plans, as appropriate, to support the CART pilot services.  Plans should receive an add-on supplemental payment for each member with DD they serve under their Medi-Cal lines of business, similar to the supplemental payments HPSM receives for previous residents of Agnews Developmental Center.  These payments should vary based on whether or not the member is eligible for Medi-Cal only, or dually eligible for both Medi-Cal and Medicare. 

Plans can then use this funding in their local communities as follows:

• Plans would identify and contract with provider practices that can serve as the enhanced medical homes for each member with DD.  These providers currently receive capitation funding for each member on their case management lists.  Plans would provide enhanced capitation for each eligible member with DD they manage, in order to support the delivery of the Medi-Cal covered health services included in the CART program, including the enhanced medical homes’ management of and/or participation in interdisciplinary care teams, case management, and health care appointments in home and community-based settings, as needed. Plans would also designate a case manager on their own staff roster to work with each enhanced medical home in the management of their assigned members’ care.
   
• Plans would identify and contract with a provider for yearly health assessment services.  The provider would serve as an independent source for collecting standardized data on patients with DD that would be shared with the enhanced medical home, the Regional Center, and the health plan, as well as loaded into the DD registry maintained by the COE.  Findings from the yearly health assessments would also be used to help shape individualized plans of care for DD beneficiaries. 
   
• Plans would develop a professional services agreement with the COE for patient-specific assessment, consultation, and technical assistance services to ensure that patients with DD receive optimal care. 
   
• Plans would contract with a university or community partner with trained/certified staff to provide health advocacy services through staff placed at the enhanced medical homes. 
   
• Plans would retain some funding to support administrative functions, including program evaluation.  Additionally, plans would each develop a local CART Oversight and Advisory Committee that would help guide the program implementation and ongoing operations.  This Committee would be comprised of representatives from the health plan, provider, and advocate communities, as well as representatives, family members, and/or caregivers of patients with DD, and it would come together at least quarterly to review progress and provide recommendations for future action.

For longer-term sustainability, the CART-EPG recommends that DHCS explore avenues for providing risk-adjusted payments to health plans for beneficiaries with DD.  These risk adjusted payments should take into account the necessary costs associated with providing the enhanced care and services proposed under the CART model.  

Proposed Budget

To support the CART model program pilot in San Mateo and San Francisco Counties in the first year, the CART-EPG requests $5 million from the reclaimed Agnews monies. 

The CART pilot budget for the following years will depend on funding availability and need.  

Qualifications and Readiness

Several factors demonstrate how and why the Health Plan of San Mateo (HPSM) is uniquely positioned to serve as a health plan for CART Model Programs pilot.

• COHS Status.  As a County Organized Health System plan, HPSM serves as the single agency within San Mateo County that administers Medi-Cal covered primary, acute care, and long-term care services for the Medi-Cal population on a mandatory basis. HPSM has historically enrolled seniors and persons with disabilities in its Medi-Cal plan, so it has over 20 years of experience serving persons with complex medical and social service needs, including patients with developmental disabilities.  The mandatory enrollment model also ensures that the pilot program will have as far- and deep-reaching impact as possible on the local Medi-Cal population of adults and transition-age youth with DD. 
   
• SNP Status.  HPSM also serves as a Medicare Advantage Special Needs Plan (MA SNP) focusing on dual eligibles. This status allows HPSM to integrate the management and service delivery of the majority of Medicare and Medi-Cal benefits under one system of care for those dual eligibles who choose to enroll. Without the SNP, HPSM would only be able to manage the care of non-dual members, and the wraparound services provided under Medi-Cal for dual-eligible members; the majority of Medicare-covered primary and acute care services would have remained outside the scope of plan control. The establishment of the MA SNP enables HPSM to manage the full range of services for those dual eligible patients with DD enrolled in the plan for the majority of patients. 
   
• Experience Serving Beneficiaries with DD.  HPSM has gained extensive experience managing the care of adults with DD as part of the closure of the Agnews Developmental Center, under which 41 individuals were placed into San Mateo County and HPSM’s Medi-Cal Program.  HPSM took active steps to ensure that these high-risk members were linked to the appropriate health and social services, leading to: 1) a dedicated nurse case manager for patients with DD on staff; 2) a dedicated physician contracted to serve as a PCP for its highest-risk patients with DD; and 3) improved collaboration with Golden Gate Regional Center and access to its case managers.
   
• Long-Term Care Integration Efforts.  HPSM has worked in partnership with San Mateo County to develop improved systems of care for seniors and persons with disabilities through efforts to integrate primary, acute, and long-term care services with home and community-based services in San Mateo County.  This effort, which would consolidate funding, administration, management, and fiscal responsibility for all of the services within HPSM, would complement the CART model once implemented.  Both programs emphasize care management and care coordination, annual assessments, and health and social service supports to enable patients to remain in home and community settings.  Both programs will also develop health plan and local provider expertise in managing the care of the County’s most vulnerable residents. 

Additionally, locating the CART model program pilot in San Francisco and San Mateo Counties will draw upon local resources and expertise that are demonstrated through the following:

• The CART-EPG.  Local providers, advocates, and stakeholders have already demonstrated their passion for and commitment to serving the patients with DD through their establishment of the CART-EPG. 
   
• UCSF.  Both San Mateo and San Francisco Counties are fortunate to have this state-of-the-art UC medical complex located in or near the counties.  UCSF offers a broad array of competencies in health service delivery, clinical competency and quality, health policy analysis, and research methods that could serve as the foundation for the development of local Centers of Excellence in the delivery of services to transition-age youth and adults with developmental disabilities.  In fact, the UCSF Department of Family and Community Medicine has already established an Office of Developmental Primary Care that is dedicated to improving outcomes for people with developmental disabilities across the lifespan and has used federal grant funding to develop a training curriculum for providers to more effectively serve patients with DD. 
   
• Golden Gate Regional Center.  San Mateo and San Francisco Counties are jointly served by the Golden Gate Regional Center for persons with developmental disabilities.  GGRC has extensive experience in coordinating services for people with DD, and the local Medi-Cal plans have already established relationships with GGRC to coordinate patient services, as required under their Medi-Cal contracts with the Department of Health Care Services.  HPSM, in particular, worked closely with GGRC during the closure of Agnews Developmental Center, and continues to meet quarterly with key GGRC staff regarding Agnews patients as well as other shared clients. 
   
• The Arc of San Francisco.  The Arc of San Francisco is a community-based organization dedicated to providing support, service, and advocacy to the population of individuals with DD.  The Arc developed a model for providing health advocacy services and began implementing this CART pillar in 2005 with funding from The California Endowment and Golden Gate Regional Center. The Arc is collaborating with the Office of Developmental Primary Care and the Family Health Center at San Francisco General Hospital to develop and improve these services.  
   
• Local Clinic Expertise.  Local efforts in both San Francisco and San Mateo Counties have contributed to the development of clinic expertise to serve patients with DD, as detailed below. 
  • The Family Health Clinic at San Francisco General, the County’s public hospital, has already begun to develop capacity for serving adults with DD.  The CART group was awarded funding that was allocated to The Arc of San Francisco to place a Health Advocate at the Family Health Clinic’s main clinic site.  Family Health Clinic is also engaging in training of faculty and residents and piloting new work flows and procedures to better serve their patients with DD.
     
  • San Mateo County has begun to develop clinics tailored to adult patients with DD.  The San Mateo Medical Center, the County’s public hospital system, will be launching the Esperanza (Hope) Clinic in mid-2010 in partnership with the Health Plan of San Mateo and the Arc of San Francisco. The Esperanza Clinic offers the first primary care clinic in the area dedicated to providing need-appropriate interdisciplinary primary care to adults with DD.  In addition to providing general acute and chronic care, there will also be an emphasis on preventive and wellness care services and on self-management as appropriate. 
     
  • San Mateo County Behavioral Health and Recovery Services, the County’s behavioral health department, has also worked with HPSM to develop the Puente (Bridge) Clinic, a specialty clinic focused on providing tailored mental health services to adults with DD.

Summary and Conclusions

The need for enhanced health care systems for transition-age youth and adults with developmental disabilities is critical, particularly as a greater number of DD beneficiaries achieve typical life spans and as more emphasis is placed on maintaining beneficiaries in home and community-based settings.  The current system fails to deliver adequate continuity, health care services, and supports to this population and is overwhelming for patients and caregivers to navigate. 

The CART model program described in this proposal seeks to address these failings through changes in the health care delivery, management, and reimbursement system.  Piloting this program in San Mateo and San Francisco Counties in accordance with this proposal will demonstrate its value and effectiveness in improving access to high-quality health care services, improving systems of care, improving health care transitions – especially between pediatric and adult health care systems, and ultimately improving health outcomes and quality of life for transition-age youth and adults with developmental disabilities.   

As DHCS continues to pursue changes in the organization and delivery of care for California’s most vulnerable and high-cost populations with the greatest need for on-going health care, the CART-EPG urges the inclusion of the CART model program pilots in the upcoming comprehensive section 1115 Medi-Cal waiver to ensure that beneficiaries with DD benefit from the opportunities the waiver will bring.  The end result will include better health status and member satisfaction in the community setting, as well as stability in costs due to improved wellness and avoidance of preventable higher cost illnesses.  Most significantly, people with DD will benefit from a health care system that is less fragmented and better organized to meet their needs.

Attachment A: The CART Executive Planning Group

Jeanette Aviles, MD 
Medical Director of Ambulatory Services
San Mateo Medical Center

Mary Lou Breslin
Co-founder and Senior Policy Advisor
Disability Rights Education and Defense Fund

Twila Brown, NP, MPH
MCAH Director
San Francisco Department of Public Health

Gerri Collins-Bride, RN, MS, ANP
Clinical Professor and Vice Chair in the Dept. of Community Health, School of Nursing
UCSF School of Nursing

Lucy Crain, MD
Clinical Professor Emeritus
UCSF School of Medicine

Susan Ehrlich, MD
Chief Executive Officer
San Mateo Medical Center

Alan Fox, MPA
Chief Operating Officer
The Arc of San Francisco

Mary Giammona, MD, MPH
Medical Director
Health Plan of San Mateo

Paul Glassman, DDS, MA, MBA
Professor of Dental Practice
University of the Pacific Dugoni School of Dentistry

Sandra Grijalva, MA
Wellness & Aging Services Director
The Arc of San Francisco