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: #H133A990013-01

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 careDisparities 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 changesAging/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 technologyChanges 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 understandingExpanded conceptual understanding and awarenessawareness of 'disability' (a multidimensional model of disability) broadens the ‘universe’ of disability

The “New” Universe of Disability Medical Care Factors

New set of primary conditionsNew set of primary conditions (e.g. neurological consequences of HIV)

Ineffective long-term managementIneffective long-term management of primary conditions (e.g. permanently reduced lung function in asthma; neuropathies cardiovascular complications in diabetes)

Improved emergency careImproved 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 sequelaeNewly 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…Emergent disabilities will affect…

• People whose survival is more likely to be followed by long-term complications long-term complications requiring rehabilitationrequiring rehabilitation

• Predominantly ethnic/racial minorities whose number is growingethnic/racial minorities whose number is growing

• The working age poor with inadequate or no insuranceworking age poor with inadequate or no insurance

• Individuals with limited health and disability literacylimited health and disability literacy

• People who struggle to understand and navigate the health care system 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

Percent change in population growth between 1990 and 2000

13.2

5.9

15.6

57.9

26.4

48.3

9.3

0 10 20 30 40 50 60 70

Total Population

White

Black/African American

Hispanic (of any race)

American Indian/AlaskaNative

Asian

Native Hawaiian/OtherPacific Islander

Percent

Source: US Census 2000

Economic participation

Unemployment by gender, age and disability

0.0%10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%

100.0%

16 to 20years:

21 to 64years:

16 to 20years:

21 to 64years:

Men Age group Women

Perc

en

t

With a disability

No disability

Universe: Civilian non-institutionalized population 5 years and over

Data Set: Census 2000 Supplementary Survey Summary Tables

Activity limitations in working age adults

Percent of individuals with any type of activity limitation due to chronic conditions by age group; NHIS 1997

13.850

36.2

0-17 years

18- 64 years

65 years and older

Asthma Trends

http://www.cdc.gov/nceh/asthma/ataglance/images/trends.jpg

Violent Crimes

http://www.ojp.usdoj.gov/bjs/glance/tables/4meastab.htm

National estimates of nonfatal firearm-related injuries in the United States, 1993-1997

0

5

10

15

20

25

30

35

40

45

1993 1994 1995 1996 1997

Year

Rat

e pe

r 10

0,00

0

National estimated rates of nonfatal firearm-related injuries per 100,000 people in the United States, 1993-1997 (CDC, 1999

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%

http://www.spinalcord.uab.edu/show.asp?durki=25426

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.

0

50,000

100,000

150,000

200,000

250,000

300,000

1993 1994 1995 1996 1997 1998 1999

Year

Count male alive

female alive

male death

female death

Estimated persons living with AIDS and Death by Year and Sexex

Estimated number of adults/adolescents living with AIDS/Estimated deaths of persons with AIDS. Data from

CDC, HIV/AIDS Surveillance Report, 2000; 12(No. 1).

Diabetes Trends

http://www.cdc.gov/diabetes/statistics/survl99/chap2/fig2.gif

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

ResearchResearch• 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 DeliveryHealth Care Delivery• Improved cultural disability literacy among providers, health plans,

purchasers• Improved minority access to behavioral health, secondary prevention

and health promotion interventions

Health PolicyHealth 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

• http://www.nrhchdr.org