Medical Health Homes for People with Intellectual and Other Developmental Disabilities and Their Families

• Grant funded by the NC Council on Developmental Disabilities to promote systems change

• Goal: To ensure people with intellectual and developmental disabilities receive the right care at the right time in the right setting

“It is difficult to live with

independence and dignity in the

community if you are not healthy.”

Adult with a Disability

CMS Triple Aim

• Improving the health of the population

• Enhancing the patient experience of care

• Reducing the cost of care

NC Medicaid Transformation

• Ensure budget predictability through shared risk and accountability

• Ensure balanced quality, patient satisfaction, and financial measures

• Ensure efficient and cost-effective administrative systems and structures

• Ensure a sustainable delivery system

What is Needed?

• A system that cares for and supports the whole person and family

• Access to a quality “usual source of care” (medical home) • Shared and supported decision-making• Outcomes that matter to the individual, family, provider,

and system • Support for individuals and families to understand care

recommendations and resources• Consistent attention to long term care and support needs• Health education and promotion

Where Is the System Going?

• Healthcare providers will manage both physical and behavioral healthcare needs and long term services and supports

• Defined / capitated budgets • Address CMS triple aims: consumer outcomes and satisfactioncost efficiency quality of and access to care

Challenges to Quality Health Care for People with I/DD• Complex medical issues• Co-occurring psychiatric conditions• Multiple medications• Communicating personal health history and care needs• Need for personal supports to access care • Need for care coordination • Lack of provider training and comfort• Inadequate reimbursement rates

As an individual’s needs become more complicated, the system is less capable of responding

(Some) Realities Encountered by People with Disability• Misdiagnosis and diagnostic overshadowing• Excessive travel to appointments • Uncompensated care• Family responsibility for navigation and management• Limited access to health education /promotion • Extensive records and multiple plans of care

“Providers need to ask the right questions. If they don't know what your living situation is they can make the

wrong assumptions and decisions.”Adult with DD

Words Matter: Definitions are complex, evolving, often mean different things to different audiences

Whole person care Informed Choice

Integrated Care Medical Home

Collaborative Care Health Home

Evidence-Based Care Social Determinants

Transformation Data Analytics

Whole Person Care

• Coordination of heath, behavioral health, disability and long term services and supports, and community services in a person-centered manner

• Goal is improved outcomes and efficient use of resources

• Emphasis is on consideration of ALL life domains and needs

Integrated Care

• Team of primary care and behavioral health clinicians, working together with patients and families, using a systematic and cost-effective approach to provide patient-centered care

• May address mental health and substance abuse conditions, health behaviors, life stressors and crises, stress-related physical symptoms, and ineffective patterns of health care utilization

• Organizational AND care integration: treatment, programs, payments, records, staff training

Collaborative Care

• On-going working relationships between providers

• Shared responsibility for treatment • Combining expertise and skills of providers• Active communication, information sharing,

and documentation

Evidence-Based Care and Practice

• Incorporates provider expertise, clinical evidence and the values, culture and needs of the person receiving care to guide health care decisions

• Planned care according to patient need• Identify high-risk patients and ensure they are receiving

appropriate care and care management services• Use point-of-care reminders based on clinical guidelines• Up-to-date information available to providers and the

care team at the time of the health care visit

Challenging “Overprotection”• Service systems have been geared towards

‘overprotection’, which is counter-productive to allowing for personal growth, informed choice, and ‘dignity of risk’

• Tendency to “go overboard” to protect, comfort, keep safe, take care of and watch over

• People with disabilities may have been given limited opportunities or support to make choices and decisions about important aspects of their lives, including health

• People must have opportunities, respectful support, and the authority to exert control in their lives 15

Social Determinants of Health

CDC Website

Social Determinants of Health

“Life-enhancing resources, such as food supply, housing, economic and social relationships, transportation, education, and health care, whose distribution across populations effectively determines length and quality of life“ NOT… controllable by the person

• Estimated that that 60% of health outcomes in the U.S. NOT related to healthcare, genes, or health behaviors

Targets

• Workforce development• Identifying gaps and ensuring care

coordination• Identify and eliminate barriers to care• Link systems of care AND providers• Identify outcomes, measure progress and

make changes

Using Data to Inform Decisions

Need to understand the needs of beneficiaries, the way they receive services, gaps, trendsSome data points to consider: • identify all enrollees and subgroups• analyze service use and cost patterns • high medical risk • where people live • ED visits and follow up care • care providers linked to target group • care management• missing links (social determinants)

Some Quality MetricsAccess to Care Satisfaction with Care

Alcohol and substance use screening Diabetes control

Ambulatory care Electronic health record (EHR) adoption

Developmental screenings in the first 36 months of life

Follow-up after hospitalization for mental illness

Patient-centered primary care home enrollment

Follow-up for children prescribed ADHD medication

Controlling hypertension Cancer screenings

Depression screening and follow up plans Emergency Dept. use

Patient Centered Medical Home

• An approach to providing comprehensive primary care for children, youth, and adults

• Facilitates partnerships between individual patients, and their personal physicians, and when appropriate, the patient's family

• A philosophy of health care delivery that encourages providers and care teams to meet patients where they are

• Replaces episodic care with coordinated care and a long-term healing relationship

“We all benefit from having a medical provider who knows us, our health history

and habits, and who can recognize changes in our health.”

Family member

Health Home (as defined by ACA and CMS)

An integrated, person-centered, and coordinated service delivery system that links primary, dental, acute, specialists, behavioral health, and long-term services and supports. Core elements are: • Comprehensive care management• Care coordination• Health promotion• Comprehensive transitional care and follow-up• Patient and family support• Referral to community and social support services• Use of health information technology to link services

Provider Competencies

• Person Centered Care• Outreach and Engagement• Medical and Health Knowledge• Communication Skills• Professionalism and Ethics• Family Support and Collaboration• Practice-Based Learning• Cultural Competency• Education, Training and Professional Development• Systems-Based Practice

Findings from State Demonstrations• High-touch interdisciplinary team • Client-centered service delivery model • Small caseloads with health navigators• Coordination of medical and behavioral health with social

services • Focus on housing and social services• Inclusion of peers as staff• Partnerships with community-based organizations• Funds to meet basic needs (air conditioning, transportation)• Fewer reporting elements and consistent definitions of data

points• On-going staff and partner education• Integrated IT and plans of care

Elements of Successful Health Programs for “High Need, High Cost” Patients• Approaches that fit local context and enrollees• Combining qualitative and quantitative methods to

identify patients• Building trusting relationships with patients as well as

their primary care providers• Matching team composition and interventions to

patient needs• Shared information in real time• Specialized training for team members • Use of technology

Foundation Elements

• Engage the individual in a trusting, collaborative relationship

• Focus on the issues that are IMPORTANT to the PERSON

• Know that things change over time

• Find out from the individual what they already know, what they want to know, what they are willing to do and where they can start

Lessons Learned from Other States

• Planning time is important• Stakeholder engagement AND education• Quality and relevant measures • Clear reporting requirements• Care coordination is critical

“It takes a team.”Young adult with DD

One of the Medical Health Home Project Recommendation:

• Establish a system of care navigation, from prevention through complex care, that offers direct assistance to individuals with disability and families

• So people can connect to and move between services and systems of care, with an emphasis on access to and continuity of health care and long term services and supports

• Designed to benefit the individual with a disability and family, as well as the service systems

Goals of Navigation

• Enhance the individual’s ability to access and successfully interact with health care professionals and make informed decisions

• Increase health care professionals’ abilities to communicate with individuals with disability and support shared decision-making

• Ensure that health services are synchronized with long-term services and supports and maximize health

• Promote self-determination and informed choice in health care decisions

Learning From Others

• Health Homes are in early stages of development• Identify and build on state, regional and

community assets• Need champions: individuals, family, advocates,

healthcare providers, legislators, state government• Data is important• Partnerships and community are critical• Need to be at the table, informed, and active

More Than One Model and Approach

• Inter-professional clinical consultation services that support patient centered medical home

• Consultations for complex medical and behavioral concerns• Use of technology• Increasing primary care providers knowledge, skills and confidence to

provide care to children and adults with mild to moderate behavioral health needs

• Utilization of psychiatrists for the most complex and high-risk patients• Facility-based hub of specialty services for patients with complex

needs offering seamless access to medical, dental psychiatric, allied health

• Community health services that are accessible, welcoming environment, have competent staff, family support

• Utilize expertise of Universities and DD Centers

Transforming Care • Redefining success

o Supporting persons with disability to achieve their goalso Person-centered care may mean upending the current

paradigms (institutional, professional, etc.)

• Some challengeso Reconciling medical goals with person-centered goalso Redefining professional responsibilityo Redefining personal responsibilityo Redefining quality

33

All individuals should have timely access to health care that is:

High quality Comprehensive: physical, dental, behavioral health,

vision, audiology, labs, DME, AT, preventive screenings, etc.

Accessible Affordable Individualized and person-centered Maximizes health and function Increases independence and community participation

Core Values and Principles

Focus on Individual and Family Quality and Safety

Person Centeredness Accountability

Self-direction Coordination of Care and Services

Choice Community Partnerships

Stakeholder engagement Inclusive and integrated settings

Equity and Fairness Stable statewide infrastructure

Values based outcomes Balancing Flexibility and Predictability

NC SEG Outcomes: implications and opportunities for health

• No Waiting Lists

• Integrated Employment

• Inclusive Living

• Asset Development

• Accountable System

NC SEG Expectations

Entrance to System Services

Waiting Lists Quality

Assessments Quality Providers

Person-Centered Planning Payment Structure

Self-direction System Transition

Support Coordination Participant Protections

Reflection and Action toTransform Care

• What I can do

• What my community can do

• To achieve these goals I need

• To achieve these goals the state needs to

THANK YOU

Karen Luken

karenluken@gmail.com