it is not a hospital discharge… it is a community admission

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It Is Not A Hospital Discharge… It Is A Community

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Page 1: It Is Not A Hospital Discharge… It Is A Community Admission

It Is Not A Hospital Discharge…

It Is A Community Admission

Page 2: 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

Page 3: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 4: It Is Not A Hospital Discharge… It Is A Community Admission

Special Kids

Special Skills ???(not really)

Page 5: It Is Not A Hospital Discharge… It Is A Community Admission

But, a few more....

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

Page 6: It Is Not A Hospital Discharge… It Is A Community Admission

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)

Page 7: It Is Not A Hospital Discharge… It Is A Community Admission

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

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

Page 8: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 9: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 10: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 11: It Is Not A Hospital Discharge… It Is A Community Admission

Beyond the “Standard” Assessment

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

Page 12: It Is Not A Hospital Discharge… It Is A Community Admission

Developmental • AAP emphasis on the developing brain

• Developmental monitoring•Screening•Surveillance•Assessment

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

Page 13: It Is Not A Hospital Discharge… It Is A Community Admission

Screening Tools

Questionnaires• PDQ• AAP • EIP• Customized

Observation

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

Page 14: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 15: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 16: It Is Not A Hospital Discharge… It Is A Community Admission

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)

Page 17: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 18: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 19: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 20: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 21: It Is Not A Hospital Discharge… It Is A Community Admission

Transition to School

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

assessment• Physician advocacy may be necessary

Page 22: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 23: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 24: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 25: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 26: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 27: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 28: It Is Not A Hospital Discharge… It Is A Community Admission

Assistive TechnologyClearing Houses

•Abledata•RESNA•Alliance for Tech Access•TRACE

Page 29: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 30: It Is Not A Hospital Discharge… It Is A Community Admission

Service Dog Information

•Houston: (281) 497-2505

•Austin: (512)891-9090

•Website: www.THSD.com

Page 31: It Is Not A Hospital Discharge… It Is A Community Admission

Transition School Work

Home Community

Pediatric Adult Care Centered

Care

Page 32: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 33: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 34: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 35: It Is Not A Hospital Discharge… It Is A Community Admission

Transition in Health Care Barriers

• lack of readiness (teen, parent, doctors)

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

Page 36: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 37: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 38: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 39: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 40: It Is Not A Hospital Discharge… It Is A Community Admission
Page 41: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 42: It Is Not A Hospital Discharge… It Is A Community Admission

Natural

Informal

Formal

Page 43: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 44: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 45: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 46: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 47: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 48: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 49: It Is Not A Hospital Discharge… It Is A Community Admission

Peer-Support Groups

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

Page 50: It Is Not A Hospital Discharge… It Is A Community Admission

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

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

Page 51: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 52: It Is Not A Hospital Discharge… It Is A Community Admission

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

6. Respite7. Respite8. Respite9. Respite

10. Respite

Page 53: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 54: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 55: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 56: It Is Not A Hospital Discharge… It Is A Community Admission

Recreation•Travel

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

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

Page 57: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 58: It Is Not A Hospital Discharge… It Is A Community Admission

Organized Sports

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

Page 59: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 60: It Is Not A Hospital Discharge… It Is A Community Admission

Natural

Informal

Formal

Page 61: It Is Not A Hospital Discharge… It Is A Community Admission

Formal Supports• Educational• Financial

• Insurance - Medicaid• SSI• Special Needs Wills

• Barrier free environments• Personal care assistants• Legal assistance

Page 62: It Is Not A Hospital Discharge… It Is A Community Admission

Financial Assistance

•Health Insurance

•SSI

•Special Needs Will(Supplemental Trust)

Page 63: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 64: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 65: It Is Not A Hospital Discharge… It Is A Community Admission

“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 $$”

Page 66: It Is Not A Hospital Discharge… It Is A Community Admission

Formal Supports• Educational• Financial

• Insurance - Medicaid• SSI• Special Needs Will

•Barrier free environments•Personal care assistants•Legal assistance

Page 67: It Is Not A Hospital Discharge… It Is A Community Admission

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.

Page 68: It Is Not A Hospital Discharge… It Is A Community Admission

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

Page 69: It Is Not A Hospital Discharge… It Is A Community Admission

The Role of the French Physician (15th century)

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