Developmental Screening and Assessment

1. Developmental Screening and Assessment Finding Children and Families who Need Help

2. Who Am I? • Debbie: • Developmental and Behavioral Specialist • Certified Pediatric Nurse Practitioner and Certified Pediatric Mental Health Specialist Certified Family Life Educator • College Lecturer at Oregon State University Cascades Campus, teach classes on supporting students with significant disabilities, their families, and development across time • Managing owner of Juniper Pediatrics • Researcher • Childhood disabilities • Family Trauma and Transitions

3. Who Are You? • Self Advocates? • Teachers? • General Education Teachers? • Special Education Teachers? • Parents? • Medical Professionals?

4. Children with Developmental Delays or Learning Disabilities • 10-20% of children across the world are estimated to have developmental delays and/or learning disabilities. • Causes: • Genetics • Prenatal • Early environmental deprivation/trauma • Injury • Illnesses • Combination

5. Who Finds These Children? • Families (40%) • Physicians (20%) • Community Screening Programs (5%) • Schools (10%) • Other (10%) • Missed until middle school (15%) “You can estimate the number of prison beds needed by the number of 3rd graders who cannot read” (Senator Waldin, 2009).

6. The Earlier We Screen, and Find, the Better the Outcomes.

7. IDEA: Individuals with Disabilities Education Act • Public Law 94-142 • First passed in 1975 (Education for All Children Act). • Amended in 1997, 2004, and 2012 (IDEA) • Increased focus on younger children and family involvement • Increased attention to screening infants and young children. • Increased conditions covered (i.e., Health impaired, other) • Accomplishments include: • increasing education of children with disabilities to over 200,000 children under age 3 years and 6 million school-aged children. • Increased education at home school and in regular classrooms • Increasing high school graduation rates 14% • Improved employment • decreased institutional care

8. The Process of Screening vs. Assessment Target Population Screen • Identify: • Pass • Questionable • Fail Rescreen Assess Diagnosis

9. Choosing a Screening Tool • Valid: Does it test what it says • Specificity: True positives • Sensitivity: True negatives • Reliable: Are results repeatable across time and setting? • Time: Can the screening be done in a busy practice • Training: Who can administer the screening? • Cost: Is the screening test affordable

10. Consistent Screening • APA recommendations for screening development: • Be informed and trained regarding developmental screening • Know referral resources in the community • Early intervention • Specialist • Support and advocacy groups • Include screening results with a physical examination and parent interview • Know and understand how to present results to families and other professionals. • Choose an appropriate screening tool.

11. Choosing an Appropriate Screening Tool • Decision based on: • Desire to observe skills: • Denver II Developmental Screening Tool • Batelle Developmental Screening Tool • Parental report: • Ages and Stages • Minnesota Developmental Inventory • PEDS • Suspected disorders: • CHAT • Conner’s ADHD Screening Form

12. Adding Screening to the Pediatric Visit • Parent interview • Parental questions and concerns • Family medical and social history • Pregnancy and birth history • Infancy history • Developmental milestones • Health patterns • Health, nutrition, sleep, elimination, temperament and coping, behavior, relationships, parenting values and beliefs, and sensory perception and integration. • Physical examination

13. Activity • We will review a case study using screening protocols discuss results: • The protocol will include a parent interview, physical examination, and observed developmental screening using the Childhood Autism Rating Scale and an Ages and Stages Questionnaire.

14. Case Study • Single mother of 5 year old male comes to clinic with complaints that her son has been expelled from three preschools. • She needs to work full time and cannot find child care • She is feeling desperate and lonely due to no one wanting to take care of her child, and no one wanting her to come to their house with her son due to his difficult behavior. • Her pediatrician has not found anything wrong with her son, and recommended parenting classes for her. He also recommended her son repeat preschool and start kindergarten next year.

15. What Would You Do? • After listening to the interview with the mother, and observing a young boy with high activity level, impulsive behavior, excessive talking, and poor attention (changing activities every 3 minutes)? • After listening the answers on the ASQ 60 month • After reviewing the results of the Connor’s Questionnaire?

16. Discussion • Following the demonstration of the protocol, discuss your results with your team members. Answer the following questions: • How much time did it take to complete and score the observed tool? • How much time did it take to complete and score the parental report tool? • What concerns would you have at the conclusion of this screening visit?

17. Example Screening Program: Healthy Beginnings Are We Needed?

18. Children with Disabilities • A few facts: • 17% of the children in the United States have a disability that will interfere with their development, health, behavior, social relationships, and/or academic achievement. • Only 50% of these children will be identified before kindergarten

19. Healthy Beginnings • One of 9 community screening programs in the U.S. today. • Helps to identify children with developmental, health, behavioral, and/or social risk factors and provides follow-up to those families. • Helps monitor the outcomes of our community. • Works closely with community physicians and agencies caring for our children. • Is Healthy Beginnings needed?

20. But Our Pediatrician Does That…. • A study conducted by the American Academy of Pediatrics found that 65% of pediatricians felt inadequate in their education regarding childhood development and screening.

21. The American Academy of Pediatrics and the American Academy of Neurology Recommends Developmental Screening in a Clinical Office, but…. • 64%of pediatricians reported insufficient time to conduct developmental screenings in the office.

22. And….. Barriers to Developmental Screening in Primary Care Clinics From: Barriers for Conducting Developmental Assessments (APA, 2000)

23. Why are Pediatricians so Busy? • Diagnosis and treatment of common and uncommon medical conditions. • Health surveillance (well baby checks). • Screening and intervention for safety concerns. • Screening, intervention, and referral for child abuse and neglect. • Screening, intervention, and referral for domestic violence. • Screening, intervention, and referral for mental health concerns in children and parents (i.e., postpartum depression). • Monitoring and administration of immunizations. • Continuing education, collaboration, and consultation with other community professionals. Which one of these should be sacrificed?

24. All of this in less than 20 minutes… • Average visit length increased 14% from 1994 (14.2 min) to 2006 (16.4 min). • The shortest amount of time is spent with children birth-five years, with the most amount of time (17 minutes) spent with children 13-17 years of age. • When time is short, relationship building time is reduced, especially for male children and fathers. LENGTH OF PEDIATRIC VISITS ACTUALLY INCREASING Alicia Merline, Lynn Olson, William Cull.. Department of Research, American Academy of Pediatrics, Elk Grove Village, IL. Presented at the May 2009 Pediatric Academic Societies Annual Meeting.

25. What About Dental? • Although largely preventable, dental caries remain the most common chronic illness in children (CDC). • 18% (1999) to 24% (2006) children aged 2-4 years have untreated dental caries. • 69% of children are currently receiving fluoride in water or supplements. The remaining 31% are at risk.

26. Why Not Add Dental Screening to Pediatrician Visits? • The U.S. Preventative Task Force (2004) found that there was no validated risk-assessment tools for assessing dental disease risk by primary care clinicians and little evidence that primary care clinicians are able to systematically assess risk for dental disease among preschool-aged children. • The task force recommended pediatricians receive the results of screening, and provide fluoride prescriptions and information. • The CDC found that community programs are more successful at reducing dental caries and saving money.

27. What About Vision? • 20% of children under the age of 8 years have undetected vision problems. • Those children are more likely to do poorly in school and sports, and be inaccurately diagnosed with attention deficit disorder. • 75% of children in juvenile detention centers have undiagnosed and/or untreated vision problems. • Pediatricians screen approximately 69% of preschool aged children for vision problems. Ethnic minorities and those of lower income are at the highest risk for not being screened. • Half the children with amblyopia (weak eye muscles) are not treated until after age 5 years, when treatment is too late to prevent permanent damage.

28. What About Hearing? • Hearing loss is the most common congenital condition in the U.S. • 1 in 1000 children have significant hearing impairment. • The earlier the identification of hearing loss, the better the outcomes for the child. • Half the infants identified as having a hearing loss at birth are lost to follow-up.

29. What Happens to Those Missed… • The most often missed are low-income families and their children (CDC). • Once a child is identified, the wait time for a visit with a developmental/behavioral specialist is 69 days. • Reports consistently find that half of the children identified with concerns in clinic settings do not make it to the specialist’s office or early intervention services.

30. One Child • Amber was an adorable 8 year old child with thick hair and a warm smile. • Her mother, a teacher, had decided to home school Amber because she seemed to struggle in the public school and fell behind. • She arrived to our clinic with Amber, stating, “I just don’t know what I am doing wrong. She is 8 years old and cannot read”. • Through testing, we learned Amber had significant developmental delays, and was functioning at the 4 year level. • No one had screened her development.

31. Many Children • Jarod did not qualify for early intervention. By age 3 years, his behavior was so out of control, he had been kicked out of 5 preschools. • Cody had not developed speech by age 3 years. He was labeled autistic. He was found to have an unidentified hearing loss, and once corrected is doing well. • Mark did well until age 2 years. He lost his speech. He was identified as autistic. His symptoms disappeared when his parents received education about parenting and the stress Mark felt through their conflictual divorce. • Spencer was 11 years old before he was diagnosed with mild cerebral palsy and received treatment. • Emily, Jack, Tanner, Hannah, Max, Lucy, Seth, Tristan, Drew………………………………………………………………………….. • All of these children could have been identified and helped by Healthy Beginnings.

32. Recommendations • All children need a medical home and regular health surveillance. • All children need a systematic developmental, health, and behavioral screening using standardized measurement tools. • By working together, we can make a difference to Amber, to Mark, to all the children in our community.

33. Steps After Screening • Developmental Assessment • Ideally, includes observation and parental perception across settings and across time. • Valid and reliable. • Completed by a trained professional. • Example: Batelle Developmental Inventory • Referral to Early Intervention Services (Individual Family Service Plan (IFSP)) • Referral to specialist for diagnosis and treatment. • Follow-up and evaluation of goals, diagnosis, and treatment. • Family services, education, and support.

34. Because…. • Children can’t wait.

35. Summary • Developmental screening and assessment are important parts to quality care of children. • Screening should be done with valid and reliable tools by trained professionals. • Assessment should include a thorough history, exam, and observation of skills. • Community screening programs can assist in finding children in need. • Because, children really cannot wait.