It Is Not A Hospital Discharge…

It Is A Community Admission

It Is More Than Health Care

...Fitting the pieces together

Literature

Technol

$

Social

Dev/Educ

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

Special Kids

Special Skills ???(not really)

But, a few more....

• assessment tools• team members• community supports• minutes• dollars

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)

Components of any Medical Home (MH)•accessible•continuous (age & spectrum of care)

•compassionate•comprehensive•coordinated•culturally competent•family-centered

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

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

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

Beyond the “Standard” Assessment

•Developmental•Socio-emotional•Functional•Educational•Transitional

Developmental • AAP emphasis on the developing brain

• Developmental monitoring•Screening•Surveillance•Assessment

• Goal: Early referral to an early intervention program (EIP)

Screening Tools

Questionnaires• PDQ• AAP • EIP• Customized

Observation

•Denver - II•ELMS•CAT/CLAMS•BINS •Dev Profile - II

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

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

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)

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

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

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

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

Transition to School

• Occurs at age three years• Individual Education Plan (IEP)• Based on an educational

assessment• Physician advocacy may be necessary

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

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

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

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

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

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

Assistive TechnologyClearing Houses

•Abledata•RESNA•Alliance for Tech Access•TRACE

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

Service Dog Information

•Houston: (281) 497-2505

•Austin: (512)891-9090

•Website: www.THSD.com

Transition School Work

Home Community

Pediatric Adult Care Centered

Care

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

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

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

Transition in Health Care Barriers

• lack of readiness (teen, parent, doctors)

• strong emotional attachments• reluctant adult care providers• few multidisciplinary options• lack of funding

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

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

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

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

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

Natural

Informal

Formal

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

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

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

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

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

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

Peer-Support Groups

• Friends Health Connection• Winners on Wheels• NICHCY• Disability-Specific Chat Rooms• Sib-Shops (206-368-4911)

Informal Supports• Parent Literature• Parent Support Organizations• Peer Support Organizations

• Community Agencies• Child Care• Respite and Respite Care Waivers• Recreation• Organized Sports

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

1. Respite 2. Respite 3. Respite 4. Respite 5. Respite

6. Respite7. Respite8. Respite9. Respite

10. Respite

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

Respite Models•Center-based•In-home•Family Co-op•Emergency•Hospitality

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

Recreation•Travel

•Travelin Talk•Accessible Travel Magazine•Access-Able Travel Source•S.A.T.H.

•Theme parks - EP directory•National parks•Camping*•Toys

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

Organized Sports

•Special Olympics•Wheel Chair Sports•USA CP Athletic Assoc

Informal Supports• Parent Literature• Parent Support Organizations• Peer Support Organizations• Community Agencies• Child Care• Respite and Respite Care Waivers• Recreation• Organized Sports

Natural

Informal

Formal

Formal Supports• Educational• Financial

• Insurance - Medicaid• SSI• Special Needs Wills

• Barrier free environments• Personal care assistants• Legal assistance

Financial Assistance

•Health Insurance

•SSI

•Special Needs Will(Supplemental Trust)

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

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

“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 $$”

Formal Supports• Educational• Financial

• Insurance - Medicaid• SSI• Special Needs Will

•Barrier free environments•Personal care assistants•Legal assistance

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.

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

The Role of the French Physician (15th century)

•To cure sometimes•To relieve often•To comfort always