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Primary Care Perspectives on Developmental Disabilities: A Pediatric Viewpoint

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Down Syndrome. Nurse Practitioner Early Start & Children. Neurodevelopment ... Down Syndrome, Cerebral Palsy, Spina Bifida, Seizure disorders ... – PowerPoint PPT presentation

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Title: 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_at_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 projects San Francisco Los
    Angeles
  • 1969 Seven additional regional centers Alta
    California Regional Center

Video Were Here to Speak for Justice
Founding Californias 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
Substantial Disability
  • 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

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 (
  • 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 _at_ 5min
  • Severe persistent metabolic abnormality
  • hypoglycemia, acidemia, hyperbilirubinemia in
    excess of exchange transfusion levels

10
Common diagnoses in 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
Examples of Other Services
  • 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

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 MRIs
  • Physical clues to DD
  • Developmental Behavioral clues
  • Family History clues
  • Clues to metabolic diseases

19
Observations
  • 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

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
    MedicineLoss 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
Observations
  • 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

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 cures or 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 First Language
  • 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

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 HollandBut, If you spend your life
    mourning the fact that you didnt get to Italy,
    you may never be free to enjoy the very special,
    the very lovely thingsabout Holland
  • Give value
  • Dont 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
Observations
  • 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

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_at_altaregional.org
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