It Is Not A Hospital Discharge… It Is A Community Admission

It Is More Than Health Care

...

Fitting the pieces together Socia l Literature $ Dev/Educ Technol

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

Child/Family,

includes family support resources

Pediatrician

and other medical providers

School

, includes early intervention

Community Based Team Insurance

providers/financial resources

Social Services

, includes mental health

Religion

/spiritual supports

CWD: Additional Components Broader array of assessment tools Awareness of community resources Team 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 stream developmental age chronological age > 85% is normal 70 - 85% is suspect < 70 %is abnormal

EXAMPLES

10 mos old w/ GM skills solid to 8 mos 8 mos = 80% 10 mos 10 mos old w/ GM skills solid to 6 mos 6 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 Technology Clearing 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 Pediatric Care Community Adult 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 Community

Training (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

Formal Informal Natural

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. Respite 7. Respite 8. Respite 9. 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) 552-6670 Access-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

Formal Informal Natural

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: • Miss = 81%, Texas = 79% • Hawaii = 27% Calf = 39% mean = 56% • 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

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

The Role of the French Physician (15th century)