Lessons about Toxic Chemical Exposures from Persons with Intellectual and Developmental Disabilities

1. Lessons about Toxic Chemical Exposures from Persons with Intellectual and Developmental Disabilities Carolyn Graff, PhD, RN

2. Objectives Contribution of environmental factors to intellectual and developmental disabilities (I/DD). Factors contributing to increased risk of toxic chemical exposure in children to include children with I/DD. The effects of lead, mercury, and environmental tobacco smoke exposure on children. Strategies to prevent, minimize, and/or manage exposure in children with I/DD. Translation of research findings to clinical practice.

3. Causes of Intellectual and Developmental Disabilities Prenatal (genetic, metabolic, teratogens) Genetic Single-gene Chromosomal Complex or multifactorial Perinatal (infections, hypoxia, injury) Postnatal (infections, trauma, tumors, hypoxia, environmental agents)

4. Prevalence of Genetic Disorders*

6. Neurotoxicants: Data and Research Studies Known Neurotoxicants Lead Mercury Nicotine Polychlorinated biphenyls (PCBs) Alcohol EPA testing on a few chemicals No testing on majority of chemicals

8. Chemical Exposures and Developmental Outcomes Timing Periods of developmental vulnerability Dose Amount Duration Pattern

9. Chemical Exposures and Developmental Outcomes The effects vary depending on the timing, dose, and frequency of exposure. Genetics, nutrition, infections, social environment also influence developmental outcomes. The relationship between exposure and developmental outcomes is complex.

10. Factors Contributing to Increased Risk of Exposure in Infants and Children Prenatal and postnatal exposure Higher intake per kilogram of weight Immature and developing organs and systems Higher metabolic rates Behavioral patterns conducive to exposure

11. Child with I/DD at Risk for Toxic Chemical Exposures Behaviors Persisting Past a Developmentally Appropriate Age Engages in hand-to-mouth activity Mouths or chews on objects such as clothing or furniture Continues mouth breathing

12. Child with I/DD at Risk for Toxic Chemical Exposures Communication Skills Has difficulty communicating to others about how exposure occurred Has difficulty communicating to others about symptoms of exposure

13. Child with I/DD at Risk for Toxic Chemical Exposures Motor Skills Requires assistance when washing hands Requires assistance to move away from irritating fumes Spends long periods of time indoors year round Requires carrying or lifting by adults Crawls, sits, or lies on the floor when indoors

14. Child with I/DD at Risk for Toxic Chemical Exposures Nutrition Has a dietary restriction or diet self-restriction Has a higher metabolic rate Engages in pica

15. Child with I/DD at Risk for Toxic Chemical Exposures Health Problems Related to Intellectual and Developmental Disability Has frequent respiratory illnesses Has signs/symptoms similar to those resulting from exposure

16. Status of Developmental Toxicity Testingfor the 2,863 ChemicalsProduced Above 1 million pounds/year

17. Toxic Chemicals: Where to Start? Making a Difference . . . Lead Mercury Nicotine (Environmental Tobacco Smoke)

18. Effects of Lead Exposure Low IQ Difficulty reading Distractibility Hyperactivity Aggression Antisocial behavior Failure to complete school Trouble with the law

19. Association of Teacher Ratings With Student Lead Burden

20. Sources of Lead Ingestion Paint chips Food or drinking water Eating utensils Jewelry Inhalation Industrial sources Hobbies

21. Sources of Lead Items containing lead that are brought into the home Candy Folk and traditional medications Ceramic dinnerware Metallic toys and trinkets (MMWR, March 23, 2006, 55,1-2)

22. Strategies to Minimize and Manage Lead Exposure Lead screenings Clinical interview Proper nutrition Remove sources of lead Chelation therapy

23. Lowering of the CDC’s Recommended Action Level for Blood Lead in Children

24. High Dose Effects of Mercury: Prenatal Exposure Severe cognitive impairment Seizures Cerebral palsy Sensory disturbances Abnormal gait Abnormal speech Swallowing and sucking problems

25. Low Dose Effects of Mercury: Prenatal Exposure Impairments (at age 7-9) of: Motor skills Attention Visual spatial skills Language Memory

26. Sources of Mercury Contaminated fish Power plant emissions Thermostats Fluorescent light bulbs (broken) Folk rituals and home remedies Thermometers (broken)

27. Strategies to Prevent and Minimize Mercury Exposure Avoid fish known to have high levels of methylmercury Remove items containing mercury from home Contact local fire department or environmental clean-up company to clean up mercury spills

28. Effects of Environmental Tobacco Smoke (ETS) Physical Asthma Lower respiratory illnesses Altered lipid profiles Cancer Dental caries Serous otitis media Infectious illness SIDS

29. Effects of Environmental Tobacco Smoke (ETS) Developmental Deficits in math Deficits in reading Deficits in visuospatial reasoning skills

30. Strategies to Prevent ETS Exposure “Smoke Free” Environment Home Car Child Care Smoking Cessation Programs Proactive Health Care Professionals

31. Challenges For Health Professionals Most health professionals have limited knowledge of sources of toxic chemicals and their effects. Environmental history forms do not take into account the abilities and limitations of children with I/DD. Health professionals and caregivers may attribute signs and symptoms of toxic chemical exposure to the I/DD and overlook potential for exposure.

32. Challenges For Health Professionals No single research study has examined the effects of toxic chemical exposure on persons with I/DD. A paradigm shift is needed. . .from thinking that chemical exposures occur at the factory or on the farm to. . .everyone carries “a body burden” of toxic chemicals in their blood, urine, fat, and breast milk.

34. Environmental History CH2OPS Community Home Hobbies Occupation Personal School http://www.cape.ca/children/history1.html

35. Practice that Protects Assess for specific risks during well-child health care visits Prioritize problems that pose the greatest risk Assess resources and capabilities of parent or caregiver Start small – “doing the doable” (Allison D. Davis, 2005)

36. Resources National Library of Medicine – Environmental Health and Toxicology, Specialized Information Services http://sis.nlm.nih.gov/enviro.html Pediatric Environmental Health ( 2nd Ed) available at www.aap.org/bookstore Physicians for Social Responsibility http://www.psr.org/home.cfm?id=environment The National Environmental Education and Training Foundation http://www.neetf.org/Health/index.htm University of Maryland School of Nursing http://www.EnviRN.umaryland.edu

37. Challenges for Researchers and Scientists Examine the effects of chemicals on children and adults with I/DD Examine multiple or poly-chemical exposures in persons with I/DD NICHD, NIEHS, CDC collaborative research efforts to explore toxic chemical exposures in I/DD population

38. Research/Science and Health Care Research/Science Health Care Practice Research/Science Health Care Practice

39. Acknowledgements Laura Murphy, EdD, Boling Center for Developmental Disabilities, College of Medicine, University of Tennessee Health Science Center Shirley Ekvall, PhD, RD, University of Cincinnati, Department of Nutritional Services Michelle Gagnon, MPH, former Director of the Environmental Health Initiative, AAIDD Ted Schettler, MD, MPH, Science and Environmental Health Network

40. Laura Abulafia, MHS Environmental Health Initiative American Association on Intellectual and Developmental Disabilities http://ehinitiative.org The AAMR Environmental Health Initiative