invisible children: access to oral health care for children

Invisible Children:Access to oral health care for children with

developmental disabilities from migrant farm worker families in a Northern California region

Brian Swann, DDSCalifornia Endowment Fellow

Joseph L. Henry Oral Health Fellow in Minority Health Policy

May 18, 2007

2Background• U.S. Surgeon General’s Report on Oral Health (2000)• Children of farm workers experience a rate of tooth

decay 2x the general population of children.• Children with developmental disabilities have

increased risk of – Poor oral hygiene

– Broken teeth

– Filled teeth/extractions

• Untreated dental disease leads to pain, abscesses, decay, infections, malnutrition, death

Source: National Survey of Children with Special Health Care Needs, 2001

California Regions

www.inn-california.com/maps/mapallca.html

4

Background

San Andreas Regional Center• Community-based, private nonprofit corporation for

people with developmental disabilities funded by the state of California

• Four county area- San Benito, Monterey, Santa Clara, Santa Cruz

• Provides diagnostic and prevention services and confidential screening

• Dental referrals• Serves 12,000 clients (adults and children)

5

Objectives

• Gain insight into the oral health care of migrant children with developmental disabilities

• Bring attention to this unreported population

• Identify the barriers that oral health care providers face

6

Definitions

Developmental Disabilities refers to:• A severe and chronic disability that is attributable to a

mental or physical impairment that begins before an individual reaches adulthood

• These disabilities include mental retardation, cerebral palsy, epilepsy, autism and disabling conditions closely related to mental retardation or requiring similar treatment

Source: California Department of Developmental Services

7Definitions

Migrant farm worker refers to:• Hired farm worker• Seasonally changes jobs and seasonal locations• Relocates from country or state• A subpopulation of farm workers

Source: California Research Bureau

8

Methods

• Systematic Literature Review

• Interviews

• Surveys

9

Methods: Literature Review

– Key search words

• Developmental disabilities

• Migrant farmers• Oral health• California• Children

– Resources • PubMed • ERIC• Google• Medline

10Methods: Interviews

– Oral health researchers and specialists• University of California

San Francisco• University of the Pacific

Dental School• Tufts Dental Facilities

Special Needs Program• Children’s Hospital Boston

– Administrators and directors

• Pan American Health Organization

• San Andreas Regional Center

• American Academy of Developmental Medicine and Dentistry

11Methods: Interviews

1) Do you know if the children with developmental disabilities and special needs (CDDSN) you serve are from a migrant farm worker family?

2) Who provides the oral health services to CDDSN in general?

3) Do you have demographic information as it relates to the number of CDDSN of migrant farmers in your region?

4) Do you think it is important to maintain this demographic data on CDDSN?

•Oral health researchers and specialists

12Methods: Interviews

1)Do you know if the children with developmental disabilities and special needs (CDDSN) you serve are from a migrant farm worker family?

2)Who provides the oral health services to CDDSN in general?

3)Do you have demographic information as it relates to the number of CDDSN of migrant farmers in your region?

4)Do you think it is important to maintain this demographic data on CDDSN?

5)How do you establish trust among migrant farm workers who may be undocumented immigrants?

•Administrators and directors

13

Methods: Survey

• Survey– Instrument developed based on

• Literature review• Interviews• Existing surveys

14Methods: Survey

• Identification Process– California Dental Association, Greater Bay Area

Dental Society, References from interviews– Selection Criteria

• Type of facility – Clinics, private practices, hospital-based

• Geographic area – Bay Area, Silicon Valley (sub-region of San Andreas), Central Coast, San Joaquin Valley

• Disciplines – Oral health care providers (generalists, specialists, hygienists) and health administrators

• Survey Distributed to – 22 health administrators– 50 oral health care providers

15Results: Literature Review

• California produces most of the nations fruit and vegetables, wine, and nuts – Strawberries is the largest employer crop– Increased demand for labor– $25 billion agricultural industry

• 2.5 million migrant farm workers in the U.S.– 36% work in California (900,000)

• California farm workers– 4 of 5 workers are males – 29 years median age– 20% under 17 years of age– 80% Latino– 70% are undocumented – 66% children are citizens

16Results: Literature Review

• Oral Health Care Barriers– Major one is cost for the farm worker family

• Farm worker median income for family of 4 = $17,700

• Non-farm worker median California family of 4 = $68,500

– Patients pay out-of-pocket cash for dental services

– 40% uninsured

– 45% of residents are insured (MediCal)

– 38% below poverty level

– 30% not seen by doctor

Source: California Research Bureau

17Results-Literature Review

• Environmental Hazards– Farm work is one of the most hazardous job

• 12 injuries per 100 people annually

• 1/3 injuries are on children

– Exposure to bacteria, viruses, pesticides– Extended work hours– Adverse weather conditions– Repetitive work methods– Family working units

Source: National Survey of Children with Special Health Care Needs

Results: Literature Review

• 2.2% of all California children

• Hispanics/Latinos comprise the second largest group of children with developmental disabilities. (32%)

White

Asian

Polynesian

Other

Black

Filipino

Native American

Hispanic

208,048 California Children with Developmental Disabilities

19Results: Literature Review

• Developmental disabilities California children– 82,001 Female – 39%– 126,047 Male – 61%

• Latino children with developmental disabilities– 22,528 Female - 40% – 33,698 Male – 60% – Underreporting highest in Latino families

Source: National Survey of Children with Health Care Needs

Results: Interviews

Do you know if the children with developmental disabilities and special needs (CDDSN) you serve are from a migrant farm worker family?

No

Who provides the oral health care services to CDDSN in general?

•Private Dental Practices (limited services)

•Community Health Center Clinics

•Hospital Emergency Rooms

•Dental Schools

University of California San Francisco (UCSF)University of the Pacifica Dental School

Results: Interviews

Do you have demographic information as it relates to the number of CDDSN of migrant farmers in your region?

No

Do you think it is important to collect this demographic data on CDDSN?

Yes, it is under consideration to add collection of such data at the time of screening for dental care services

University of California San Francisco (UCSF)University of the Pacifica Dental School

Results: Interviews

Do you know if the children with developmental disabilities and special needs (CDDSN) you serve are from a migrant farm worker family?

No. Question not asked out of respect for patient and family confidentiality.

Who provides the oral health care services to CDDSN in general?

•Private Dental Practices (limited services)

•Community Health Center Clinics

•Hospital Emergency Rooms

•Dental Schools

Administrators and Directors: San Andreas Regional Center

Results: Interviews

Do you have demographic information as it relates to the number of CDDSN of migrant farmers in your region?

No

Do you think it is important to collect this demographic data on CDDSN?

The collection of limited data that is pertinent to health services is collected.

How do you establish trust among migrant farm workers who are undocumented immigrants?

•Culturally sensitive

•Continuity of care

•History of relationship with the community

Administrators and Directors: San Andreas Regional Center

24Results: SurveyOral healthcare providers• 24% response rate to date• Majority identify as private

practices and clinics• 60% currently treating

children with disabilities• 50% have minimal training • 100% have a willingness to

treat

• Barriers– Education – Space– Equipment

• Methods of reimbursement for those seeing children with disabilities– Out of pocket cash payments

(32%)– Private insurance (30%)– Other (DentiCal or free) (38%)

25Conclusions

• Reporting and tracking data for children with developmental disabilities and special needs (CDDSN) are very limited and in most cases, non-existent

• The families of migrant children are the poorest in the state and very vulnerable to causal factors such as environmental hazards

• CDDSN of migrant farmers have limited access to oral healthcare

• More than 60% of migrant children, which includes CDDSN, are eligible for oral, medical, and educational services

• Oral health providers face many barriers that result in limited accessibility to CDDSN

• Greater provider participation may require greater reimbursements

26

Policy Recommendations

• Enhance oral health provider training• Develop comprehensive oral healthcare

models (PAHO)• Direct more funding towards oral healthcare

treatment centers• Identify and track vulnerable populations

with safeguards against deportation• Improve communication between existing

institutions, agencies, and organizations

27

Policy Recommendations

Educate Stakeholders:

To have citizens with developmental disabilities and special needs appropriately recognized as a federally designated medically underserved population.

Source: American Association of Developmental Medicine & Dentistry

28Acknowledgements• Dr. Saskia Estupian-Day, Preceptor, PAHO• Dr. Chester Douglas, Advisor, Harvard School of Dental Medicine • Dr. Joan Reede, Director, Harvard Medical School • DCP Staff • Dr. Paul Glassman, UOP• Dr. Steve Pearlman, AADMD• Dr. John Morgan, Tufts Dental Facilities• Dr. Barry Waldman • San Andreas Regional Center• Dr. Myron Allukian• Drs. Nelson & Ng, Children’s Hospital • Dr. Jane Weintrab, UCSF