Emergent Disabilities in the United States: New Challenges for Rehabilitation and Public Health Thilo Kroll, PhD; Melissa J McNeil, MS, MSW; Susan Palsbo, PhD National Rehabilitation Hospital Center for Health and Disability Research Washington DC Funding by NIDDR: #H133A

What Is An ‘Emerging Disability’? Changes in the epidemiology and etiology will cause certain conditions to emerge as “new or newly recognized disabilities” creating a new universe of disabilities

The “New” Universe of Disability Sociological and Environmental Factors  Disparities in access to health care  Disparities in access to health care Disability in highly prevalent conditions (e.g. asthma, diabetes) resulting from lack of access to timely and appropriate prevention/rehab services including self-management  Aging/sociodemographic changes  Aging/sociodemographic changes of the population leads to increase in the prevalence of disabilities (e.g. arthritis, stroke, cardiovascular problems, cancer-related disabilities)  Changes in the workplace technology  Changes in the workplace technology paired with unequal access to assistive equipment increase prevalence of repetitive motion syndromes (e.g. strain injuries such as carpal tunnel syndrome)  Expanded conceptual understandingawareness  Expanded conceptual understanding and awareness of 'disability' (a multidimensional model of disability) broadens the ‘universe’ of disability

The “New” Universe of Disability Medical Care Factors  New set of primary conditions  New set of primary conditions (e.g. neurological consequences of HIV)  Ineffective long-term management  Ineffective long-term management of primary conditions (e.g. permanently reduced lung function in asthma; neuropathies cardiovascular complications in diabetes)  Improved emergency care  Improved emergency care (e.g. SCI/TBI) for conditions that were once fatal.  Multimorbidities  Multimorbidities following survival of primary condition (e.g. cancer, heart disease, arthritis)  Newly recognized disabling sequelae  Newly recognized disabling sequelae resulting from successfully treated primary conditions (e.g. secondary malignant tumors)

Who Will Be Impacted by Emerging Disabilities? Emergent disabilities will affect… long-term complications requiring rehabilitationPeople whose survival is more likely to be followed by long-term complications requiring rehabilitation ethnic/racial minorities whose number is growingPredominantly ethnic/racial minorities whose number is growing working age poor with inadequate or no insuranceThe working age poor with inadequate or no insurance limited health and disability literacyIndividuals with limited health and disability literacy health care systemPeople who struggle to understand and navigate the health care system

Demand and Supply

Market perceptions Medical complexity and shortened treatment duration –“…inpatient hospital days continue to shrink, and as a result, in our transitional rehab unit, we’re seeing people that are increasingly medical complex, have many more medical needs and are much more at risk for re-hospitalization than they have been in the past…” (Inpatient rehab provider) Premature rehabilitation –“They discharge people now too soon from the hospitals, so if there is an inpatient rehabilitation place they get them so much sicker and in worse shape…they can’t do rehabilitation. But the days are up, and the rehab hospitals know that the insurance is running out, and they want to get them out of there…’(consumer advocate) Provider shortage –“…it has caused a severe shortage of rehab providers that are willing to serve long- term care and skilled nursing facilities. The change was so quick and the financial impact so significant that we lost a lot of providers…” (Home healthcare provider)

Population grows at different speed Source: US Census 2000

Economic participation Universe: Civilian non-institutionalized population 5 years and over Data Set: Census 2000 Supplementary Survey Summary Tables

Activity limitations in working age adults

Asthma Trends

Violent Crimes

Etiology of SCI since 1990 Causes of SCI Vehicular crashes equal 38.5% Violence equals 24.9% Falls equal 21.8% Other causes equal 7.9% Sports' injuries equal 7.2%

TBI incidence rate, risk factors, and causes. 5.3 million Americans are living today with a TBI-related disability. The leading causes of TBI are motor vehicle crashes, violence, and falls Each year more than 80,000 Americans survive a hospitalization for traumatic brain injury but are discharged with TBI-related disabilities. For persons of all ages, the risk of TBI among males is twice the risk among females. The risk of having a TBI is especially high among adolescents, young adults, and people older than 75 years of age.

ex Estimated persons living with AIDS and Death by Year and Sex

Diabetes Trends

Role of Rehabilitation Linking primary, secondary, and tertiary prevention multidisciplinary approach provide assistance and treatment in response to physical, social, psychological and economical needs

Barriers to realized access to health maintenance and rehabilitation Environmental barriers transportation urban vs. rural qualified provider shortage access to care facilities Sociocultural barriers linguistic (health) and disability literacy/management knowledge support network lack of culturally competent providers alternative, indigenous health beliefs and intervention models Economical barriers insurance income Individual barrier gender/role function cognitive, emotional, physical barriers Co-morbidities

Some principal barriers on the supply side Loss of specialist, especially social workers Decline in length of stay in acute care and inpatient rehab Greater medical complexity in transitional rehab Discharge into nursing homes that cannot provide appropriate rehabilitation services Severely disabled (e.g. TBI) do not receive full spectrum of services due to cost containment Cost shifting from private to public payers

Implications Research Context-sensitive definition of operational characteristics of cultural disability literacy for healthcare providers and insurers Improved understanding of the social context of disability and health care delivery Health Care Delivery Improved cultural disability literacy among providers, health plans, purchasers Improved minority access to behavioral health, secondary prevention and health promotion interventions Health Policy Redefined concept of medical necessity/maintenance (need to replace the acute care model) Knowledge transferKnowledge transfer from innovative programs in the private insurance sector (e.g. community partnership) to the public sector with more limited resources

Further reading on Emerging Disabilities Health and Disability Issue Briefs: Emerging Disabilities Series Available at the National Rehabilitation Hospital Center for Health and Disability Research