Primary Care Perspectives on Developmental Disabilities: A Pediatric Viewpoint

1. Primary Care Perspectives on Developmental Disabilities: A Pediatric Viewpoint Terrance D. Wardinsky MD Medical Director Alta California Regional Center Sacramento California 1-916-978-6263 twardinsky@altaregional.org

2. Introduction and ReviewDD 101 for Pediatricians • Brief Overview of RC system & Eligibility • Early Start Services • Updates to RC system • Clinical Services • Demographics of RC system • Observations about Health aspects of DD

3. Lanterman Act 1965 Lanterman Retardation Act • First two pilot projectsSan Francisco Los Angeles 1969 Seven additional regional centersAlta California Regional Center Video:” We’re Here to Speak for Justice” Founding California’s Regional Centers

4. Lanterman Act • 1974 Expanded definition to developmental disabilities • Cerebral Palsy • Epilepsy • Autism • Other significantly handicapping conditions related to Mental Retardation requiring similar services

5. Lanterman Act • 1974 Expanded definition also included • Originates before the age of 18 • Continues or can be expected to continue indefinitely • Constitutes a substantial handicap • 2003 added Federal definition of “substantial disability”

6. Entitlement • All services voluntary • Unique to California • Entitled to services: • IPP (Individualized Person Planning) • IFSP (Individualized Family Support Plan) • Other States have waiting lists

7. A condition which results in major impairment of cognitive and/or social functioning The existence of significant limitations in 3 or more of the following areas Communication Learning Self-care Mobility Self-direction Capacity for independent living Economic self-sufficiency Substantial Disability

8. Early Intervention (0-35 months) • Based on the Individuals with Disabilities Education Act (IDEA) • Enhance the development of at risk infants • Preventing the need for special education • Actual delay • Significant difference between age expectations and actual functioning • Established condition of DD or parent with DD • High Risk for delay • Must have two or more of the following risk factors

9. High Risk Examples • Prematurity of less than 32 weeks and /or • Low birth weight (<1500 gm = 3 lb. 5 oz) • Small for Gestational Age (below the 3rd percentile • Assisted ventilation for 48 hours or more during the first 28 days of life • Asphyxia neonatorium, Apgar of 0-5 @ 5min • Severe & persistent metabolic abnormality • hypoglycemia, acidemia, hyperbilirubinemia in excess of exchange transfusion levels

10. Common diagnosesin Early Start Program • Prematurity • Infants of Substance Abuse • Physical Abuse • Genetic Syndromes • Congenital Birth Defects • Autism • 70% transition out of Early Start by 35 months • 20 % of those ineligible at 35 months, return

11. Updates to the Regional Center System • Wellness initiatives and AB 1038 • Provide services to improve behavior, psychological, pharmacological, mental health, dental, and general health services through clinical teams • Many Wellness health grants • Collaboration with CMA, UC Medical Centers, Hotlines, Websites, and courses in DD for health care providers

12. Members of Clinical Services • Medical Doctors • PhD Psychologists • Nurses • Pharmacologist • Dental Coordinators • Applied Behavior Analysts • Speech Therapist • Occupational Therapist

13. Specialty Clinics • Down Syndrome • Nurse Practitioner Early Start & Children • Neurodevelopment • Dysmorphology and Genetics • Mental health • Neurology • Behavior Modification Classes • Autism • Metabolic

14. Respite services Adaptive equipment Behavior Intervention Bereavement Day programs Nutritional supplements Transportation Infant development programs Intensive early autism treatment Supported living Independent living skills training Residential placement Examples of Other Services

15. Clinical Services • A special web site for information on medical conditions more commonly associated with people with developmental disabilities and various common syndromes of Mental Retardation • www.ddhealthcareinfo.org • www.altaregional.org

16. Demographics of RC System • Approaching 200,000 enrolled consumers • Significant decrease in State Developmental Center enrollments 1.6% • 71.6% of consumers reside in the home of parents or guardians • The fastest growing segment of the DDS population are individuals of Hispanic descent • Birth to 21 years = 56.5% of consumers • 60.2% Male & 39.8% Female

17. Demographics of RC System(December 2004) • MR 32.8% • Epilepsy 21% • CP 19.4% • Autism 15.1% • 5th Category 9.8% in December 2004 • Autism showed an overall increase • 5.3% in December 1994 • 15.1 % in December 2004

18. Clinical Assessments for DD • Different levels of diagnostic test for MR • When to consider cytogenetic studies • Indications for Brain MRI’s • Physical clues to DD • Developmental & Behavioral clues • Family History clues • Clues to metabolic diseases

19. Mental illness with Dual Diagnosis is not uncommon (some surveys suggest 10 - 50 %) Mental Health Disorders: Anxiety-Depression Obsessive-Compulsive Disorders Mood Liability Aggressive Behavior Disorders Bipolar Psychosis Observations

20. Observations • Very vulnerable to physical and sexual abuse • 4 -10X & often under reported • Often in their residences by persons they know • Close to 80% of women with DD have been sexually abused at some point in their lives • More severe abuse, for a longer duration & be victims of multiple episodes by a larger number of perpetrators • May have a vulnerability due to “compliance training” & a desire to “fit in”

21. Observations • Poor transitions from Pediatrics to Internal Medicine—Loss of their “Medical Homes” • Pediatricians get well trained at managing physical and developmental disorders • Down Syndrome, Cerebral Palsy, Spina Bifida, Seizure disorders • Assist the transition to adult care providers • not just discharged from your practice • The new physician should be willing to “partner” with the consumer, family, & other providers • May use a special needs case manager in an HMO

22. Observations • May have complex care needs • often with low reimbursement • Resulting in poor access and poor health care • Lack communication and often arrive in the emergency room without medical records • May have behaviors that at times are difficult to manage

23. Failure of communication Many behaviors may represent underlying medical conditions “The Psychological Masquerade” Jaw rubbing Fist jamming Chewing on hands & fingers Uneven sitting Frequent Masturbation Head banging or head tilt Observations

24. Observations • Health professionals may not be trained in developmental disability care • “The times are a changing” • Developmental Disability care is being taught more often • Medical, Dental, and Mental health care that is delivered in the community has improved a great deal in the past decade…

25. Observations • R/O underlying medical condition first, especially with unusual behaviors • Changes in Mental Status • Anemia • Low Thyroid • PICA • Electrolyte & Glucose Imbalance • Neurologic Conditions (stroke, subdural hematoma, seizures, brain tumors) • Medication effects • Depression and other Mental Illnesses

26. Observations • Mortality differences • Various peaks of death • Similar vital stats • Appear to receive appropriate care • No suicide • Accidental deaths • Die of typical things with more respiratory, gastrointestinal, and seizure related deaths

27. Observations • Profiles for various syndromes of mental retardation are helpful for more successful management of health, behavior, and education • As we have learned about more individual DD Conditions, it is apparent that these conditions follow certain road maps to improved care • Examples: Down Syndrome, Fragile-X, Fetal Alcohol, Williams Syndrome, Prader-Willi

28. Observations • Oral Health is often not given attention • Several Dental Grants with the University of Pacific School of Dentistry • Educate& Train • Parents • Consumers • residential care providers • Dental providers • Provide All preventive treatments • Brushing - Sealants - Xylitol gums • Flossing - Fluoride - Lozenges

29. Observations • Parents often request unusual therapies • Regional Centers try to offer Evidence Based Therapies • Parents may be very vulnerable to experimental, non-evidenced based, testimonial therapies • Seeking curesor worry that they may “miss the window of opportunity” • Examples; Chelation; Secretin: Facilitated Communication; Hyperbaric O2 Therapy

30. Observations • Consent for Care as defined by the Lanterman Developmental Disabilities Services Act • If not conserved and of age 18, Regional Center personnel may consent to care • Treatment plan should be appropriate and reflect standards of care • Not to be used for controversial procedures (sterilization, abortion)

31. Observations • People first Language • Language is a reflection of how people see each other & sometimes the words we use can hurt • It is also why responsible communicators are now choosing language which reflects the dignity of people with disabilities-words that put people first

32. People with disabilities NOT “handicapped or disabled” People with Mental Retardation or with Cognitive impairment NOT “He or she is retarded” The child has autism NOT this “autistic child” A person with Down Syndrome NOT this “Down Syndrome patient” A congenital disability NOT “a birth defect” Uses a wheelchair NOT“confined to or wheelchair bound” Orthopedic disability NOT“crippled or lame” Has short stature NOT she is a “dwarf or midget” People First Language

33. Observations • Community Placement and Residential Care homes • Residence Types: • Own or Family Home • Community Care • ILS/SLS • SNF/ICF • Bates Homes

34. Observations • Grieving & Bereavement • Good ways to break bad news? • Welcome to Holland…”But, If you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland” • Give value • Don’t be overly pessimistic • Adaptation not Acceptance

35. Observations • Sterilization • Remains a controversial issue in the gynecologic care of females with MR • Historically the legal system has gone through alternating extremes over the past century with this issue • Current practice is to consider all available alternatives • recommend sterilization only if no suitable alternative is available or with specific medical indications

36. Person Centered Planning “Transitioning into Adulthood” Should be a part of the IPP process Some considerations for… Education-Vocation-Job Training Day Programming Health Insurance Residence Sexuality Recreation & Friendship Voting Conservatorship Social Security Observations

37. Introduction and ReviewDD 101 for Pediatricians • Brief Overview of RC system & Eligibility • Early Start Services • Updates to RC system • Clinical Services • Demographics of RC system • Observations about Health aspects of DD

38. Primary Care Perspectives on Developmental Disabilities: A Pediatric Viewpoint Terrance D. Wardinsky MD Medical Director Alta California Regional Center Sacramento California 1-916-978-6263 twardinsky@altaregional.org