it is not a hospital discharge… it is a community admission
TRANSCRIPT
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It Is Not A Hospital Discharge…
It Is A Community Admission
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It Is More Than Health Care
...Fitting the pieces together
Literature
Technol
$
Social
Dev/Educ
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OVERVIEW• Medical Home for CWD - a little different
• Working with the educational system • IFSP and early intervention programs• IEP and the education system• ITP and transition to adulthood
• Accessing community resources• parent educ, advocacy, support• community agencies • respite and recreation• financial
• Educating the PCP
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Special Kids
Special Skills ???(not really)
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But, a few more....
• assessment tools• team members• community supports• minutes• dollars
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Medical Home• traditional pediatric care• emphasizes a mutual relationship• broad health care plan
• medical (traditional and non-traditional)• developmental• behavioral• educational• social
• long range (infancy to adulthood)
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Components of any Medical Home (MH)•accessible•continuous (age & spectrum of care)
•compassionate•comprehensive•coordinated•culturally competent•family-centered
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Community-Based Team
Child/Family, includes family
support resources
Insurance providers/financial
resources
Pediatrician and other medical
providers
School, includes early intervention
Social Services, includes mental
health
Religion /spiritual supports
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CWD: Additional Components
Broader array of assessment toolsAwareness of community resourcesTeam Skills vs Care Coordination Skills:
• medical and surgical subspecialists• social workers and home health nurses• therapists, orthotists, prosthetists, DME vendors• intervention specialists, teachers, ed diagnos• counselors, psychol, behavior mgmt specialists
Advocacy Skills:• authorizations for medical care• authorizations for school related services• financial assistance programs• public policy issues
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The “Standard” Assessment• History
• Chief complaint• History of present illness• Pregnancy and neonatal history• Family history• Developmental and school history• Review of systems
• Physical Exam
• Screenings • hearing and vision• growth and development• dental• Hct, etc
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Beyond the “Standard” Assessment
•Developmental•Socio-emotional•Functional•Educational•Transitional
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Developmental • AAP emphasis on the developing brain
• Developmental monitoring•Screening•Surveillance•Assessment
• Goal: Early referral to an early intervention program (EIP)
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Screening Tools
Questionnaires• PDQ• AAP • EIP• Customized
Observation
•Denver - II•ELMS•CAT/CLAMS•BINS •Dev Profile - II
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Surveillance• The art of being suspicious• Parental concerns are valid!!!• Continuous monitoring at every visit
• Pre-printed milestone checklists • Developmental milestone tables (texts/articles) • Use of standardized tools to validate suspicions
• Developmental age for each streamdevelopmental age
chronological age > 85% is normal
70 - 85% is suspect < 70 %is abnormal
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EXAMPLES
10 mos old w/ GM skills solid to 8 mos8 mos = 80%10 mos
10 mos old w/ GM skills solid to 6 mos6 mos = 60%10 mos
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Developmental Assessment
• Targets children at risk • Time consuming • Requires training and expertise• Often performed by a team• Assesses quality as well as skill level• Addresses etiology (neuro, genet, etc)
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Functional Assessment• Follows developmental assessments• Assesses the child’s ability to perform skills
independently w/wo devices
• Mobility• Communication• Self Help: feeding, dressing, hygiene
• Standardized tools• Vineland• WeeFIM• PEDI• AAMR
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Early Intervention Programs
• Available to infants from the time of diagnosis until age 3 years
• Known disability• Developmental delay• At risk for disability or delay
• Promote development & family function• Mandated by the IDEA entitlement• Large menu of services
• parent education, empowerment, advocacy• habilitation services (OT, PT, ST, behav mgmt)• assistive technology• respite, transportation, etc
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Evolution of IEP’s• Privately funded . . . . Publicly funded
• Open referral . . . . . . Geographic assign
• Multidisciplinary . . . . Transdisciplinary
• Center-based . . . . . . . Home based or DCC
• Child centered . . . . . . Family centered
• IDP. . . . . . . . . . . . . . . . .IFSP
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EIP: Pediatrician’s Role• Referral - early, don’t wait for DX
- “48 Hour Rule”
• Medical assessment • etiology vs co-existing disorders• subspecialty consultations
• Care Coordination• Development of the IFSP• Authorizations for treatment• Education of providers re: diagnosis• Communication and monitoring
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Transition to School
• Occurs at age three years• Individual Education Plan (IEP)• Based on an educational
assessment• Physician advocacy may be necessary
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Educational Supports• Re-authorization of the IDEA (1997)• Entitlement: DX 21 yrs• Special education techniques & staff• Related services (PT, OT, ST, RN)• Assistive technology• Extended year services• Non-educational services• Transitional services
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Components of an IEP
• Current level of functioning and DX• Goals and objectives for school year• Related services needed to goals
•special education•therapy (PT, OT, ST) and nursing•assistive technology devices
• Frequency, duration and provider of related services
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Components of an IEP• Placement (LRE philosophy)• Supports needed for LRE placement• Transitional services - if > 14 years old• Extra curricular activities
• Respite (“non-education funds”)• Extended year services• Recreation
• Monitoring of progress• Tools• Frequency
• Signatures
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Physician’s Role in the IEP• Authorize for svc via medical categories:
•Other Health Impaired (ADHD, CHI, SZ)•Orthopedically Handicapped•Vision and/or Hearing Impaired•MR diagnoses (Down, FXS, William's)
• Advocate for psychometric testing• Evaluate for co-existing health
concerns…..authorize medical Rx• Coordination of services• Communication and educ (med<-- >EIP)• Advocate for related svc & assist technol
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Medically-based Therapy• health care service requiring physician Rx• requires insurance/HMO pre-authorization• addresses periodic life issues
• new equipment (braces, crutches, W/C)• post surgical• transition to oral feeding
Educational-based Therapy• provided at no cost (gov subsidized)• usually consultative • addresses devel and educ milestones• driven by the IFSP services at home• driven by the IEP services at school
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Assistive Technology• Purpose: to prevent (or decrease) deformity
to increase function
• Timing is critical and depends on DD• Low tech vs. high tech devices
• Positioning• Mobility• ADL (activities of daily living)• Communication• Educational• Recreational
• Service animals
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Assistive TechnologyClearing Houses
•Abledata•RESNA•Alliance for Tech Access•TRACE
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Computer Technology
• Apple: 1-800-600-7808
• IBM: CAT (Center for Adapted Tech) Easter Seals in Colorado Phone: 1-303-233-1666 Fax: 1-303-233-1028
• RJ Cooper Software 24843 Del Prado Dana Point CA 92629
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Service Dog Information
•Houston: (281) 497-2505
•Austin: (512)891-9090
•Website: www.THSD.com
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Transition School Work
Home Community
Pediatric Adult Care Centered
Care
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School Work Background: PACER Center
• ADA (1990) • Rehab Act (1992):“supportive employment”• IDEA (1990 and reauthorized in 1997)
Individualized Transition Plan (ITP)• supplements or replaces the IEP at age 16• student becomes a member of the team• identify vocational goals• addresses training (OJT and volunteer)• community agencies and services • rehab counselor is important team member• evaluation of progress
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Home CommunityTraining (informal &/or formal ILS classes)
• early responsibility for self-care, hygiene• behavior, social skills, and leisure activities• homemaking (cooking, cleaning, laundry)• financial and budgeting• public transportation or adaptive vehicles • interview, hire, supervise & fire attendants
Settings: LRE• institutional• group homes• apartments• own home with/without spouse
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Transition in Health Care Preparation
• Encourage responsibility for own care• Should be planned, not crisis initiated• Identification of new adult provider(s)• Transition interview• Self-directed portable records• Teaching physical exam
Process• Evaluate readiness*• Record sharing and open communication• Overlap in care• Then let go………. but do not abandon
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Transition in Health Care Barriers
• lack of readiness (teen, parent, doctors)
• strong emotional attachments• reluctant adult care providers• few multidisciplinary options• lack of funding
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Guardianship: The Alternative to Transition
• Formal determination is now required at 18 years of age
• Often triggered by surgery or a hospitalization
• Requires legal action, not by default• petition must be filed• court hearing
• Costs between $500 - $2000
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Guardianship• Is different from conservatorship of the
estate• Responsible for all decisions except:
• psychosurgery • electric shock therapy• sterilization• experimental treatments
• If teen is borderline alternatives • Kinship is not the conclusive factor in
determining the guardian
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OVERVIEW• Medical Home for CWD• Working with the educational system
• IFSP and early intervention programs• IEP and the education system• ITP and transition to adulthood
• Accessing community resources• parent educ, advocacy, support• community agencies • respite and recreation• financial
• Educating the PCP
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Community Supports
• In the family’s eyes, these are often more critical than medical services when caring for CWD
• Lack of physician knowledge and expertise often the source of parental discontent
• Surveys reveal physician-parent mismatch
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Levels of Support• Natural
• family• neighbors • friends
• Informal• clinic and IEP contacts• parent support groups• community agencies• Literature & Internet
• Formal Entitlements• education (IEP and schools)• Medicaid, SSI
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Natural
Informal
Formal
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Informal Supports• Parent Literature and Web sites• Parent Support Organizations• Peer Support Organizations• Community Agencies• Child Care• Respite and Respite Care Waivers• Recreation• Organized Sports
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Parent Literature• Exceptional Parent Magazine
• Monthly publication (articles, advertisments)
• Special inserts (spasticity, mitochondrial DO)
• Family Library• Annual Resource Guide• Web site• Search and Respond
• Brookes Publishing• Woodbine House• Medic Publishing• AACPDM List
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CWD Web Sites for Families
• Ctr of Children with CI & D• Exceptional Parent Magazine• Family Voices• MUMS (parent support)• Natl Ctr for Youth with Disabilities• National Parent Network on Disabilities• NICHCY• Our Kids
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OVERVIEW• Medical Home for CWD• Working with the educational system
• IFSP and early intervention programs• IEP and the education system• ITP and transition to adulthood
• Accessing community resources• parent educ, advocacy, support• community agencies • respite and recreation• financial
• Educating the PCP
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CWD Web Sites for Families
• Ctr of Children with CI & D• Exceptional Parent Magazine• Family Voices• MUMS (parent support)• Natl Ctr for Youth with Disabilities• National Parent Network on Disabilities• NICHCY• Our Kids
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Parent Support Groups• Disability-Specific Agencies
• National: literature, research, referral directories, conferences
• Local: parent-to-parent support, meetings, literature
• Parent Training and Information Ctr• Disability rights• Advocacy training
• Family Voices - political advocacy
• SNAP (Special Needs Adocacy for Parents)
• Internet Disability Chat Rooms
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Peer-Support Groups
• Friends Health Connection• Winners on Wheels• NICHCY• Disability-Specific Chat Rooms• Sib-Shops (206-368-4911)
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Informal Supports• Parent Literature• Parent Support Organizations• Peer Support Organizations
• Community Agencies• Child Care• Respite and Respite Care Waivers• Recreation• Organized Sports
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Respite: Benefits• A break from the day to day care-taking
responsibilities
• Supports families in their parenting role
• Improves stamina, re-energizes parents
• Allows renewal of spousal relationships
• Provides special time w/ normal children
• CSHCN raised at home better outcome
• CSHSN raised at home cost society less
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1. Respite 2. Respite 3. Respite 4. Respite 5. Respite
6. Respite7. Respite8. Respite9. Respite
10. Respite
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Respite: Varying Needs• High need
• dual working parents• mobile families (military)• no extended family• medically fragile child - 24 hr monitoring• children with disabilities who do not sleep• aggressive children who bite or destroy
• Low need• multiple adult siblings• large extended family, neighbors, friends• non-ambulatory(but healthy) child w/ CP/SB
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Respite Models•Center-based•In-home•Family Co-op•Emergency•Hospitality
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Respite Waivers• Goal: to provide the support needed to raise the child at home• Eligibility: Dx and burden --- not $$$• Funding
• Medically-fragile based funds• Cognitive-behavioral based funds
• Wide variation among states• Agencies providing the funds / service• Eligibility criteria• Amount of funding available
• Long-waiting lists
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Recreation•Travel
•Travelin Talk•Accessible Travel Magazine•Access-Able Travel Source•S.A.T.H.
•Theme parks - EP directory•National parks•Camping*•Toys
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Travel Resource Information
Travelin Talk: (615) 552-6670Access-Able Travel Source: (303) 232-2979
www.access-able.com
Access To Travel Magazine: (518) 4394146
Wheelchair Getaways: (800) 642-2042
SATH (Society for the Advancement of Travel for the Handicapped):
(212) 447-7284 www.SATH.org
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Organized Sports
•Special Olympics•Wheel Chair Sports•USA CP Athletic Assoc
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Informal Supports• Parent Literature• Parent Support Organizations• Peer Support Organizations• Community Agencies• Child Care• Respite and Respite Care Waivers• Recreation• Organized Sports
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Natural
Informal
Formal
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Formal Supports• Educational• Financial
• Insurance - Medicaid• SSI• Special Needs Wills
• Barrier free environments• Personal care assistants• Legal assistance
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Financial Assistance
•Health Insurance
•SSI
•Special Needs Will(Supplemental Trust)
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Health Insurance•Medicaid: managed care
•Title V: limited scope
•TANF: replaced AFDC
•SCHIP: # of uninsured children < 200% poverty level
$50B state block grants gov choice: MC or new
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Social Security Income• Cash assistance program (995,000)• Welfare reform - Aug 97• New policy - redetermination
• Categorical Diagnosis• Severe Functional Limitation
• Termination of benefits: mean = 56%• Miss = 81%, Texas = 79%• Hawaii = 27% Calf = 39%
• Appeal process: 18% 60% success
• Remain MC eligible: lower asset criterion
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“Special Needs Will”Supplemental Trust Fund
• Conventional wills that provide assets disqualify CwD for fed $$
• Gov agencies can bill inheritance for services - current and past
• Inheritance quickly exhausted• Siblings’ share also at risk• Language of a SNW must be clear - “Trust is to provide extras -- over &
above those resulting from fed $$”
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Formal Supports• Educational• Financial
• Insurance - Medicaid• SSI• Special Needs Will
•Barrier free environments•Personal care assistants•Legal assistance
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Education of the PCP• Medical School Curriculum• Residency Training
• Screening and surveillance• Strategies for working w/ educational sys• Community supports and strategy for accessing in
future assignments• Parents as teachers
• Exceptional Parent Magazine subscription
• The DDRC at C.A.M.P.
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Summary• Medical Home for CWD• Working with the educational system
• IFSP and early intervention programs• IEP and the education system• ITP and transition to adulthood
• Accessing community resources• parent educ, advocacy, support• community agencies • respite and recreation• financial
• Educating the PCP
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The Role of the French Physician (15th century)
•To cure sometimes•To relieve often•To comfort always