W. Carl Cooley, MD

Developmental Pediatrician

Chief Medical Officer, Crotched Mountain Foundation

Clinical Professor of Pediatrics, Geisel School of Medicine at Dartmouth

Disclosure

I have no financial conflicts of interest to disclose in relation to the content of this presentation.

“It’s been nearly 23 years since the Americans With Disabilities Act, a federal law prohibiting discrimination against people with disabilities, went into effect. Despite its unequivocal language, studies in recent years have revealed that disabled patients tend not only to be in poorer health, but also to receive inadequate preventive care and to experience worse outcomes.”

Agenda The population of people with disabilities

Focus on adults under age 65 – applicable to all ages

The health disparities that they experience

Improved models of care for this population

Focus on primary care – applicable to specialty care

Transitions of care for people with disabilities

Health Home model – more integrated systems of care

Next steps for improving care in your office

Discussion

How prevalent? It all depends….

Definition of disability

Age span

Method of ascertainment

Surveys

Administrative databases – e.g. Medicaid or SSDI

Registries – e.g. birth defects registries

How prevalent?

20% of adults have a disability

According to George Will, the rest are the “not yet disabled.”

How prevalent? You are familiar with disability in your patients over 80

years old

But, 20% of your young adult patients have chronic conditions of childhood onset

Half of these are associated with disability

1-3% of adults have intellectual disability

2% have autism as the new generation of youth with autism age into adulthood

2 – 3% of people in US have cerebral palsy

40% of Americans with disabilities report poor health status

Compared to 9.9% of people without disabilities

Adults with disabilities (age 21 – 64) have 3 times the unmet health care needs of adults without disabilities

Adults with Intellectual Disability

Including autism and traumatic brain injury

Eligible for Medicaid waiver for long term services and supports Provided by 10 NH area agencies

Such as, Community Bridges serving Merrimack County

Most are eligible for Social Security benefits SSDI – categorical listing or functional assessment

SSI (income/asset dependent)

Unlike most states, NH does not automatically provide Medicaid benefits to those with SSDI or SSI

Most are eligible for Medicare So called, dually eligible

Intellectual Disability

4800 NH adults qualify for NH DD/TBI waiver

17% of total NH Medicaid population

Account for 45% of NH Medicaid expenditures

Mean long term care cost = $45,000 PBPY

Mean acute care cost = $12,000 PBPY

Adults with disabilities… High need

High risk

High cost

Likely to benefit from the functionalities of a patient-centered medical home

Appropriate preventive care

Chronic condition management

Care and service coordination

Management of care transitions

Registries and population management

Medical Home

Brand name for primary care

CMHI defines the medical home as a community-based primary care setting which provides and coordinates high quality, planned, family-centered health promotion, acute illness care, and chronic condition management — across the lifespan. Care in a medical home is rewarding for clinical teams to provide and satisfying for patients and families to receive.

Appropriate Preventive Care

Clarity about shared decision-making (e.g. guardianship)

Same basic age-related guidelines as all patients

Weight, pulse, blood pressure at each visit

Accommodations may be needed

Appropriate physical examination; complete when needed

Attention to sensory impairments (hearing, vision)

Immunizations maintained

All appropriate screenings

People with disabilities are significantly less likely to receive mammography and colonoscopy at recommended intervals

Accessibility Hours – avoidance of ER visits

Physical access

Communication and language Health literacy

Use of communication devices

Necessary adaptations Accessible exam rooms, bathrooms, hallways

Adjustable exam tables

Lifts

Means of obtaining accurate weights

Chronic Condition Management Chronic condition management visits Basic knowledge of underlying condition

Genetics and familial characteristics Natural course of condition Co-morbidities

Associated health problems

Cognitive style characteristics Associated mental/behavioral health problems

Knowledge of condition specific preventive care Down syndrome – hearing, vision, thyroid function Neurofibromatosis – renal ultrasounds

www.medicalhomeportal.org

Care and service coordination

Office team member identified as coordinator

Use of written care plan

Portable medical summary

Emergency care plan, if appropriate

Iterative action plan

Constant medication reconciliation

Proactive tracking of labs, imaging, referrals

Strong relationships with service coordination counterparts, especially developmental services

Management of care transitions Three transition types

Transition from one care setting to another

Hospital to home

Hospital to rehabilitation setting

Home to skilled nursing care

Transition between periods of acute needs and periods of more stable chronic condition care

Transition from pediatric care to adult care

Transition between care settings

Vulnerable period for all patients due to lack of preparation, planning, and coordination of hand-off from one setting to the next

Lack of clarity or understanding of post-hospital care plan

Likelihood of medication confusion, duplication

Uncertainty about post-hospitalization follow-up and provider roles

High risk of readmission

Transition between acute and chronic care

Individuals with developmental disabilities have multiple complex care needs Seizure disorders

Neuromotor problems – spasticity, movement disorders

Orthopedic complications – joint subluxation, scoliosis, use of orthotics

Condition specific co-morbidities – renal disease, congenital heart disease, endocrine disorders, etc

Co-morbidities can be stable for years, but also result in periods of active, acute care needs requiring closer monitoring, follow-up, and coordination of care and services Locus of management may shift between primary care and specialty care

Transition from pediatric to adult care

Developmental and intellectual disabilities often associated with “rare” sometimes “complex” childhood onset conditions

500,000 youth with special health care needs transition from pediatric to adult care each year

Surveys of families, pediatric and adult providers reveal that more than 50% of the time this transition is not carefully planned and implemented

Growing body of evidence for adverse health outcomes resulting from failure to manage this transition well

Transition from pediatric to adult care

“Clinical Report: Supporting the health care transition from adolescence to adulthood in the medical home” – Cooley, Sagerman, Pediatrics, July 2011

Co-endorsed by AAP, AAFP, ACP

Algorithmic structure providing practice level guidance for preparation, planning, implementation of health care transitions

GotTransition – National Health Care Transition Center

Six Core Elements of Health Care Transition

Successful implementation in multiple practices in multiple states

www.gottransition.org

Health Home – according to ACA 2703

Delivers a defined set of six services

To Medicaid beneficiaries with specific chronic health or mental health conditions; or dually eligible individuals

By a designated provider, team of health professionals, or health team

Could be provided by a primary care medical home, but may involve a larger team or a non-traditional health care setting

1

Figure 2 CareConnect – Integrated Care Coordination Model

Specialists

Developmentalsupportdirectcareproviders&vendors

Hospital/ER

Work,

recreationhousing

Homehealth,DMEvendors

STARTServicesBehavioralHealthCoordination

Respitecare

ICCTeam

CareConnect Health Home Model for Dually-eligible Adults

What you can do next week…

Inventory your PCMH functionalities

Plan an office walk through from parking through a typical visit

Create a registry of patients under 65 with disabilities

Plan and track improvements in care for this population

Hold a focus group or recruit an advisory group of people with disabilities who use your services

Identify a “disability champion” on your staff

Plan “lunch and learn” sessions for all staff