Disability Statistics at NCHS:An Update

Julie D. Weeks, Ph.D.

National Center for Health Statistics

Annual Compendium of Disability Statistics ReleaseCapitol Visitor Center, Washington, DC

November 2, 2011

• ACA Section 4302 meetings

• Health, U.S. content

• Healthy People 2020 work groups

• Washington Group on Disability Statistics

• National Health Interview Survey content

• Future directions for measurement and research

A number of ongoing disability-related activities…

ACA Section 4302

2010 Patient Protection and Affordable Care Act:• Mandates the collection of data on disability status• Requires a standard disability measure• Acknowledges disability as a demographic

ACA Disability Subcommittee:• NCHS member• Recommended the 6-question ACS measure as the minimum

standard

Current status:• DHHS solicited public comments on draft standards• 10/31/2011: Secretary announced final standards

Health, U.S. and Healthy People

Health, U.S.:• Historically, used “limitation of activity due to a chronic condition”• In 2009, moved to Basic Actions Difficulties and Complex Activity

Limitation (disability measures consistent with current disability models and legislation)• Disability used as a demographic in 20+ tables (pain, SRH, alcohol use,

no usual source of care, health care visits, insurance, etc.)

HP Change in Operational Definition:Include in the core of all applicable Healthy People 2020 population data systems a standardized set of questions that identify “people with disabilities.”• Adopted ACS as the standard measure of disability for 2020 work• HP Objectives tables have disability as a demographic• Where possible ACS set used

Washington Group: Purpose

Purpose: The promotion and coordination of international cooperation in the area of health statistics by focusing on disability measures suitable for censuses and national surveys which will provide basic necessary disability information throughout the world.

Measures must be developed within the framework of a model, culturally comparable, and accepted for use across many countries.

Short Set Measure (6 questions): • Adopted in 2006 (Uganda meeting)• Approx 20 countries planning to/using the SS in census

Extended Set Measure (additional functional domains):• Adopted in 2010 (Luxembourg meeting) • Added to 2010 NHIS

Possible Domains and Activities

Mobility

• Walking

• Climbing stairs

• Bending or stooping

• Reaching or lifting

• Using hands

Sensory

• Seeing

• Hearing

Communicating

• Understanding

• Speaking

Cognitive functions

• Learning

• Remembering

• Making decisions

• Concentrating

Emotional functioning

• Interpersonal interactions

• Psychological well-being

Other

• Affect

• Pain

• Fatigue

• Self care

WG Disability Short Set

1-5. How much difficulty do you have:

seeing even if wearing glasses?hearing even if using a hearing aid?remembering or concentrating? walking or climbing stairs?with self-care, such as washing all over or dressing?

6. Because of a physical, mental or health condition, how much difficulty do you have communicating, for example understanding or being understood by others?

a) No, no difficulty c) Yes – a lot of difficultyb) Yes – some difficulty d) Cannot do at all

National Health Interview Survey Disability Content

Basic Actions Difficulties

• Movement

• Sensory

• Emotional

• Cognitive

Complex Activity Limitations

• Social and leisure activities

• Perceived ability to work

• Maintaining independence, including self care and HH chores

American Community Survey Set

Washington Group Short Set

Washington Group Extended Set

• Upper body movement

• Learning

• Affect (anxiety & depression)

• Pain

• Fatigue

Participation & QOL Measures

Location of NHIS Disability Questions: ACS and WG

2008 (4th quarter) -2009

•FDB: ACS questions – ½ sample “person” and ½ “family” style

2010

•FDB: ACS questions – “person” style

•QOL: WG questions, plus some quality of life / participation measures

2011

•FDB: ACS questions – “person” style

•CDB: ACS questions

•ADB: ACS questions

•AFD: WG questions, plus some quality of life / participation measures

What Are We Learning AboutDisability Questions from the NHIS?

2008 (4th quarter) -2009

• FDB: ACS questions – ½ sample “person” and ½ “family” style

• Do disability estimates vary by administration style? How?

• Do NHIS estimates vary from the ACS and CPS? How?

2010

• FDB: ACS questions – “person” style

• QOL: WG questions, plus some quality of life / participation measures

• Do different question sets yield varying estimates of disability? How?

• How does participation vary by disability status?

2011

• FDB: ACS questions – “person” style

• CDB and ADB: ACS questions

• AFD: WG questions , plus some quality of life / participation measures

• How do disability estimates vary when asked in the family section vs. the sample adult/child sections?

• How do extended questions on disability operate in a national survey?

Prevalence of Disability by Survey: 2009

Disability Item Ages

NHIS

CPS ASEC†

(%)

Family- Style(%)

Person-Style(%)

ACS(%)

Vision difficulty 1+ 1.7 2.1 2.4 2.2

Hearing difficulty 1+ 3.1 3.9 4.1 3.4

Mobility difficulty 5+ 6.9 6.6 7.2 6.9

Cognitive difficulty 5+ 3.5 3.9 4.7 4.8

Self-care difficulty 5+ 2.0 1.8 2.2 2.6

Independent living diff 15+ 4.0 4.7 5.1 5.4

Any disability 1+ 11.6 12.0 13.1 12.1

†NOTE: CPS data are for population 16 years and over.

Employed Not employed0%

5%

10%

15%

20%

25%

30%

3.4

16.5

4.7

22.1

5.7

24.5

5.0

20.3

Prevalence of Any Disabilityby Survey and Employment Status*: 2009

CPS ASECNHIS, FSNHIS, PSACS

* CPS and ACS cover persons 16-64; NHIS covers persons 18-64.

Where Does the ACS Fit In?

Basic Action Measures31.7%

Source: NCHS, 2010 NHIS, ages 18+

Where Does the ACS Fit In?

Basic Action Measures31.7%

Complex Activity

Limitation15.3%

10.8% Non-Overlap

Source: NCHS, 2010 NHIS, ages 18+

Where Does the ACS Fit In?

Basic Action Measures31.7%

Complex Activity

Limitation15.3%

10.8% Non-Overlap

9.0% Non-Overlap

ACS Questions19.7%

Source: NCHS, 2010 NHIS, ages 18+

Relationship of ACS to Basic Action and Complex Activity Measures

ACS Questions0

10

20

30

40

50

60

70

80

90

100

Movement DifficultySeeingHearingEmotional DifficultyCognitive DifficultySelf CareSocialWork

*

Source: NCHS, 2010 NHIS Sample Adult File, Ages 18+

Next Steps in Disability Measurement

• Incorporating disability measures in more national surveys.

•Which standard should be adopted – ACS or WG?

• Adding other functioning domains that are not currently included, for example learning and mental health.

• Development of measures of participation (other than work).

• Development of measures of the environment.

• Conduct longitudinal surveys.

• Conduct disability supplements on single-policy issues.

RowVision (1) Hearing (1) Mobility

Communi-cation

Cognition/ remembering

Upper Body

Learning/ understanding

Affect Pain FatigueADL/ IADL

Getting Along with

People

Life Activities

Participation in Society

Short SetSingle Questions (1) d a d

Extended SetMultiple Questions (1) c c c c

Use of Assistive DevicesMicro-E (2)

Functioning with Assistance, Micro-E (2)

5 Age at Onset

6 Cause

7 Duration

8 Impact ? ? ?

9Meso-Environment

(3)

10Macro-Environment

(4)

ICF Chapter Reference - Activities/Participation

ICF-1 ICF-1 ICF-4 ICF-3 ICF-1,2 ICF-4 ICF-1 ICF-2 ICF-5,6 ICF-7 ICF-8 ICF-9

Capacity Perform

ance

Basic Activity Domains Complex Activity Domains

(5) See Note below

Washington Group/Budapest Initiative/UNESCAP Activities and Workplan

QuestionnaireTopic/Type

To be obtained through other sources, not personal survey data collections

b

Thank you!

Questions?

The ACS Disability MeasuresFor sample persons 1 year of age and older:

1. Is this person deaf or does he/she have serious difficulty hearing?2. Is this person blind or does he/she have serious difficulty seeing?

For sample persons 5 years of age and older:

3. Because of a physical, mental, or emotional condition, does this person have serious difficulty concentrating, remembering or making decisions?

4. Does this person have serious difficulty walking or climbing stairs?5. Does this person have difficulty dressing or bathing?

For sample persons 15 years of age and older:

6. Because of a physical, mental, or emotional condition, does this person have difficulty doing errands alone such as visiting a doctor’s office or

shopping?

Response Categories: 1. Yes 2. No

Equalization of Opportunities

Seeks to identify all those at greater risk than the general population for limitations in participation.

Disability used as a demographic.

0

30

60

90

Prop

ortion

(%

)

Nondisabled Disabled

Employed (%)