Disability Names and Numbers: Challenges and Opportunities in Nosology,

Epidemiology, and Equity/Disparity

Maureen Durkin, PhD, DrPH

Workshop on Ensuring Quality & Accessible Care for Children with Disabilities and Complex Health and Educational Needs

National Academies of Sciences, Engineering and Medicine

Washington, DC

December 9, 2015

Overview

•  Trends in the prevalence of disabilities and complex needs among US children, and their relationship to reductions in child mortality

•  Two schools of thought affect policies and programs for children with special needs: social contract theory and utilitarianism

•  Current gaps in knowledge, research priorities

•  Societal benefits of including children with disabilities and complex needs in all programs and policies

Decline in Infant Mortality, United States, 1915-2011 (from 10% to 0.6%)

Similar Decline in Child Mortality, United States, 1910-2013

0.255

http://www.childtrends.org/?indicators=infant-child-and-teen-mortality

Rise in the % of Children with Activity Limitations Due to Health, Ages 0-17 Years, Based on Parent Reporting, U.S. National

Health Interview Survey, 1960-2011

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Haflon N, et al, The changing landscape of disability in childhood. The Future of Children, 2012; 22(1):13-42.

Much of the Rise in the Prevalence of Disability is Likely Due to Increasing Life Expectancy for

Conditions Such as Down Syndrome

http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/ http://www.cdc.gov/ncbddd/birthdefects/downsyndrome/data.html Leanard S, et al , Paediatric and Perinatal Epidemiology, 2000; 14:163-71.

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Rising % of Children with Developmental Disabilities in the U.S., based on parent report, ages 3-17,

National Health Interview Survey

%

Boyle CA, et al, Pediatrics, 2011; 127(6):1034-42

Survey Questions •  Has a doctor or health

professional ever told you that [child] had any of the following conditions?

- ADHD - Autism - Cerebral Palsy - Mental Retardation - Other developmental delay

•  During the past 12 months, has [child] had any of the following conditions?

- Seizures - Stuttering or stammering

•  Additional questions about hearing, vision, learning disability.

Greatest increases in autism and ADHD.

% of Children with Special Health Care Needs (CSHCN) in the U.S., parent report, ages 0-17, National Survey-CSHCN

%

Bethell CD, et al, Ambulatory Pediatrics, 2002; 2(1):38-48

CSHCN Screener 1.  Does your child currently need or use

medicine prescribed by a doctor?

2.  Does your child need or use more medical care, mental health, or educational services than is usual for most children of the same age?

3.  Is your child limited or prevented in any way in his or her ability to do the things most children of the same age can do?

4.  Does your child need or receive special therapy, such as physical, occupational, or speech therapy

5.  Does your child have any kind of emotional, developmental, or behavioral problem for which he or she needs or receives treatment or counseling?

Scull J, Winkler AM, Shifting Trends in Special Education, Fordham Insitute, 2011 http://edex.s3-us-west-2.amazonaws.com/publication/pdfs/ShiftingTrendsinSpecialEducation_7.pdf

Special Education Enrollment in the US Increased from ~8% in the 1970s to ~13% Today

The number of children with disabilities receiving SSI more tripled between

1991 & 2011

ASPE RESEARCH BRIEF | 4

In 1991, 0.6 percent of (or 6 out of 1,000) children under age 18 received SSI. This grew to 1.4 percent (or 14 out of 1,000) by 1996 (an increase of 124 percent), and then decreased to 1.2 (or 12 out of 1,000) percent by 2001. Child participation in SSI then rose again, reaching 1.5 percent in 2006, and 1.7 percent of children in 2011, an increase of 43 percent over 10 years (since 2001) and of 184 percent over 20 years (since 1991).

Child SSI recipiency in the context of the population of poor children shows somewhat more limited growth, with a slight decline in recent years. When considering SSI recipiency in the context of the population of ƉŽŽƌ children, increases are also somewhat more limited and patterns more varied. Eligibility requirements for participation in the child SSI program generally restrict benefits to households who are poor (below 100 percent of the federal poverty level, which in 2014 was $19,073 in annual income for a household of three) or low-income (below 200 percent of the federal poverty level, which was

Table 1. Number of Children under 18 Receiving Benefits from the SSI Program

1991 1996 2001 2006 2011

Number 397,162 955,174 881,836 1,078,977 1,277,122

Percent of children under 18 0.6 1.4 1.2 1.5 1.7

Ratio per 100 poor children 2.8 6.6 7.5 8.4 7.9 Note: These data are as of December of each year. Source: U.S. Census Bureau, Population Estimates Branch, and Social Security Administration, ^^/ �ŶŶƵĂů�^ƚĂƚŝƐƚŝĐĂů

397

955 882

1,079

1,277

0.6

1.4 1.2

1.5

1.7

0

1

2

3

0

500

1,000

1,500

1991 1996 2001 2006 2011

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Number (left axis)

Percent (right axis)

Figure 1. Child Recipients of SSI Benefits: 1991-2011

(Number and Percent of Children)

Note: These data are as of December of each year. Source: U.S. Census Bureau, Population Estimates Branch, and Social Security Administration, ^^/ �ŶŶƵĂů�^ƚĂƚŝƐƚŝĐĂů�ZĞƉŽƌƚ͖ calculations by ASPE.

http://aspe.hhs.gov/sites/default/files/pdf/139256/rb_ChildSSI.pdf

% of children in poverty who received SSI disability benefits also increased

http://aspe.hhs.gov/sites/default/files/pdf/139256/rb_ChildSSI.pdf

5 | ASPE RESEARCH BRIEF

$38,146 in annual income for a household of three).12 As such, another way to assess the growth in the child SSI program is by comparing the number of child SSI recipients to the number of poor children by using an SSI-to-poor-children ratio.13 Note that with this ratio, when the denominator (i.e. the number of poor children) fluctuates, as occurred most recently during the Great Recession, the program may appear to grow or decline when in actuality it may be relatively unchanged. The SSI-to-poor-children ratio grew markedly in the early 1990s, parallel with the expansions associated with implementation of the 1990 �ĞďůĞLJ decision, as Figure 2 indicates. Since 1996, participation in SSI by poor children has fluctuated, with increases followed by a net decline between 2006 and 2011. From 1991 to 2001, the number of child SSI recipients grew by 122 percent, while the number of poor children grew by only 11 percent. As Figure 2 indicates, this resulted in an increase in the national SSI-to-poor-children ratio from about 2.8 to 7.5 per hundred, a 171 percent increase over the decade.

From 2001 to 2006, the number of child SSI recipients grew by 22 percent, while the number of poor children grew by only 9 percent, resulting in an increase in the national SSI-to-poor-children ratio from 7.5 to 8.4 per hundred. However, from 2006 to 2011 the number of child SSI recipients grew by only 18 percent while the number of poor children grew by 25 percent, leading to a slight decline in this ratio, to 7.9 per hundred. The SSI-to-poor-children ratio saw an overall net increase of 5 percent between 2001 and 2011, although between 2006 and 2011 there was a 6 percent decrease. The exact causes of the changes during this period are unclear, and are being explored in current ASPE research.14

2.8

6.6

7.5

8.4 7.9

0

2

4

6

8

10

1991 1996 2001 2006 2011

Num

ber p

er h

undr

ed

Note: These data are as of December of each year. Source: U.S. Census Bureau, Poverty Statistics Branch, and Social Security Administration, ^^/ �ŶŶƵĂů�^ƚĂƚŝƐƚŝĐĂů�ZĞƉŽƌƚ͖ calculations by ASPE.

Figure 2. Number of Child SSI Recipients per Hundred Poor Children: 1991-2011

Increase in Number of Children with Disabilities Receiving SSI, 2000-2011, Due Mostly to

Increases in Mental Disorders

Page 13 GAO-12-497 Supplemental Security Income

Figure 4: Number of Children under Age 18 Receiving Federally Administered SSI Payments, by Mental and Physical Impairment Group, December 2000 through December 2011

Note: This figure does not include those diagnostic groups that SSA reported as “unknown.” SSA data showed that as of December 2000, “unknowns” totaled 33,042 children (4 percent of all children), and as of December 2011, 24,443 children (2 percent of all children).

Additional information on trends in the numbers of SSI applications, allowances, and benefit receipts for children with mental impairments for individual U.S. states can be found in an electronic supplement to this report.32

32See GAO, Supplemental Security Income: State Trends in Applications, Allowances, and Benefit Receipts for Children with Mental Impairments, an E-Supplement to GAO-12-497, GAO-12-498SP (Washington, D.C.: June 26, 2012).

http://gao.gov/assets/600/591872.pdf, GAO, SSI: Better Management Oversight Needed for Children’s Benefits, 2012

Rising Prevalence of Autism Spectrum Disorder

Prevalence of Autism Spectrum Disorder per 1,000 8 Year-Old Children in the U.S., MMWR, 2014

Per

1,0

00

Based on ADDM data from 12 U.S. states, population of 557,689 8-year-old children in 2002, including 3,680 with ASD. SES = Socioeconomic Status

White Non-Hispanic

Black Non-Hispanic

Hispanic Asian

PLoS One 2010

0

2

4

6

8

10

12

Low SES

Medium

High SES

Low SES

Medium

High SES

Low SES

Medium

High SES

Low SES

Medium

High SES

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alen

ce /1

,000

0

2

4

6

8

10

12

Changes Over Time in the % of US Children with Disability (Activity Limitations), National Health Interview Survey,

2001-2011

%

11%

28%

12%

21%

Houtrow A, et al, Changing trends of childhood disability, 2001-2011. Pediatrics, 2014; 134(3):530-8.

Two Traditions of Thought have Shaped Policies for Children with Disabilities and Complex Health and Educational Needs

Utilitarianism Contractarianism Benthem (1748-1832), James Mill (1773-1836) John Stuart Mill (1806-1873) Cost effectiveness: How can we allocate limited resources to maximize happiness and wellbeing for the population overall? A system with high inequality, health disparities and suffering of a minority, including people with disabilities may be acceptable if it produces maximum benefit for the population overall.

Greatest good for the greatest number (efficiency).

Hobbs (1588-1679), the social contract Kant (1724-1804), the golden rule Rawls (1921-2002), under a veil of ignorance, rational people will choose policies that benefit the least advantaged [people with disabilities/complex health/educational needs]. A just society is one that rational, self-interested individuals would pick to gain protection, in exchange for some loss of freedom.

Greatest benefit to the least advantaged members of society.

“In answer to the Inquiry of the Sub Committee by Mr Collingwood I am to desire to let them know that Idiots can’t be nursed at the usual price of other Children in this Neighbourhood. Those we have are in ye Hospital & a great trouble, You may be sure to us. Happy indeed hitherto we are that the Children don’t mimic them. If you sh’d send them we’ll send them to the Nurses that will take the most Care of them at the lowest price, but don’t approve of taking more into the House.” June, 1765, London Foundling Hospital (Levene, Alysa, Childcare, Health and Mortality at the London Foundling Hospital, 1741-1800 (Manchester: Manchester University Press, 2007), pp. 165)

Utilitarianism and Child Disability,18th Century England

Courtesy of Walton Schalick, MD, PhD

“Allocative efficiency”: how can we use limited resources to prevent the maximum number of DALYs ?

DALYs are based on the person trade-off (PTO) technique to estimate the social value of different

health states and interventions

The World Health Organization’s Utilitarian Approach to Disability: Disability Adjusted Life Years (DALYs)

http://www.who.int/healthinfo/global_burden_disease/gbd/en/

Conceptualization of Child Development: 2 Distributions

Distributions of developmental test scores: General population Individuals with known or identified disabilities

Rawl’s Theory of Justice: Alternative Distributions of Resources

Soc

ial B

enef

its, I

ncom

e, H

ealth

care

Best for the least advantaged

Distributive Justice

The Children’s Charter: The White House Conference on Child Health and Protection, 1930

•  V. For every child health protection from birth through adolescence, including: periodical health examinations and, where needed, care of specialists and hospital treatment;

•  XIII. For every child who is blind, deaf, crippled, or otherwise physically handicapped, and for the child who is mentally handicapped, such measures as will early discover and diagnose his handicap, provide care and treatment, and so train him that he may become an asset to society rather than a liability. Expenses of these services should be borne publicly where they cannot be privately met;

“CHILDREN ARE our most precious possession. The Children's Charter was written by 3,500 experienced men and women, after many m o n t h s o f s t u d y . I t condenses into few words the fullest knowledge and the best plans for making every child healthier, safer, wiser, better and happier. These p lans mus t be constantly translated into action. …”

--- Herbert Hoover

http://www.presidency.ucsb.edu/ws/index.php?pid=22593

Additional Examples of “Contractarianism” in U.S. Policies for Children with Disabilities and Complex

Health and Educational Needs

•  Supplementary Security Income (SSI) for children with disabilities, SSA 1974 Amendment

•  Individuals with Disabilities Education Act (IDEA), 1975, 1990

•  Americans with Disabilities Act (ADA), 1990

A 2015 Expression of the “Contractarian” Approach to Child Disability

National Academies of Sciences, Engineering, and Medicine. 2015. Mental disorders and disabilities among low-income children. Washington, DC: The National Academies Press.

“Children with disabilities in the United States, particularly those with mental, emotional, or behavioral disorders, are deserving of the highest level of planning and implementation for family support programs. Both at-risk families and society as a whole stand to benefit.”

-- Thomas F. Boat, M.D., Preface

International Contractarian Policies: U.N. Conventions on the Rights of the Child (CRC)

and on the Rights of Persons with Disabilities (CRPD) •  CRC Art 23, Sec 1: “A mentally

or physically disabled child should enjoy a full and decent life in conditions which ensure dignity, promote self reliance and facilitate the child’s active participation in the community.”

•  CRPD Art 27: “…Recognize the right of persons with disabilities to work...”

•  Paradigm Shift: Persons with disabilities not viewed as objects of charity, medical treatment or social protection, but as subjects with rights.

The World Health Organization’s “Contractarian” Approach to Disability: interventions to improve functioning and participation of children with disabilities are as important as primary prevention.

Contrasting Definitions of Disability •  ADA, Title V: a physical or mental impairment that

substantially limits one or more major life activities of an individual, expected duration not <6 months –  SEC. 12102. [Section 3], http://www.eeoc.gov/laws/statutes/ada.cfm

•  SSI: a medically determinable physical or mental impairment, which results in marked and severe functional limitations, and which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months” (SSA, 1997), http://www.nap.edu/read/21780/chapter/5#35

•  CSHCN: consequence-based, need for or use of healthcare or special education for chronic conditions, … http://www.childhealthdata.org/browse/survey/results?q=2625&r=1

Arguments for a Contractarian and Inclusive Approach to Children with Disabilities and Complex Health and Educational Needs

•  Investments in children with special needs benefit all people

•  Inclusive education benefits all children

–  Empathy, compassion, appreciation of diversity

•  Utilitarian benefit – interventions to improve health, functioning & participation of children with special needs will save money in the long run, across the lifecourse

•  Potential to reduce health & economic disparities

•  Morally, it’s the right thing to do.

Barrier-Free Designs & Technology Enhance Participation of People with Physical and Sensory Disabilities,

and Benefit Everyone

Barrier-Free Technology Coming of Age http://trace.wisc.edu/

Power wheelchair with augmented communication device

Hand-held wireless device sends text messages to hearing aids

http://www.w3.org/WAI/

Gaps in Knowledge, Research Priorities

•  How to quantify, classify and monitor levels of disability, functioning, and complex health and education needs at the population level

•  How to incentivize innovations and inclusive, high quality care in the context of healthcare reform

•  How to ensure access to care for those in greatest need

Main Points •  Improvements in survival and economic

development are associated with increases in the prevalence of disability and special needs, which now affect up to 20% of US children

•  Investing in children with disabilities and complex needs reduces disparities and benefits everyone

•  Need for greater attention to the functional and participation dimensions of disability, and their multiple determinants (beyond the medical model)

References 1. Newacheck, P. W., N. Halfon, and P. P. Budetti. 1986. Prevalence of activity limiting

chronic conditions among children based on household interviews. Journal of Chronic Diseases 39(2):63–71.

2. Strickland BB, et al, Assessing systems quality in a changing health care environment: the 2009-10 National Survey of Children with Special Health Care Needs. Maternal and Child Health Journal, 2015; 19:353-61.

3. Halfon N, Houtrow A, Larson K, Newacheck PW, The changing landscape of disability in childhood. The Future of Children, 2012; 22(1):13-42.

4. Bethell C, et al, Taking stock of the CSHCN Screener: a review of common questions and current refletions. Academic Pediatrics, 2015; 15(2):165-76.

5. Krahn DL, et al, Persons with disabilities as an unrecognized health disparity population. American Journal of Public Health. 2015; 105(S2):S198-205.

6. Newacheck PW, et al, Trends in activity-limiting chronic conditions among children. American Journal of Public Health. 1986; 76:176-84.

7. Newacheck PW, Halfon N, Prevalence and impacts of disabling chronic conditions of childhood. American Journal of Public Health, 1998; 88:610-17.

8. Bethell CD, et al What is the prevalence of chidren with special health care needs? toward and understanding of variations and findings across three national surveys. Maternal and Child Health Journal. 2008; 12:1-14.

9. National Academies of Sciences, Engineering, and Medicine. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press, 2015.