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Michelle “Sheli” Reynolds, SIBLING, PhD

Missouri Family -to-Family

University of Missouri - Kansas City

Institute for Human Development, UCEDD

NAVIGATING THE MAZE:

MAPPING SUPPORTS FOR

YOUR LIFE COURSE

Sibling of 30 year old brother with developmental

disability

Director Individual Advocacy & Family Support

UMKC Institute for Human Development

12 years supporting self-advocacy movement (People First

of MO and SABE)

Director of Mo Family-to-Family

Technical assistance to continue moving policy and

practices to support the “national agenda for supporting

families with disabilities”

ABOUT ME

MY

FAMILY

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Become familiar with the formal system of

supports in Missouri

Learn about informal supports and why they are

crucial for families

Discover how to make the transitions from one

system to another as seamless as possible

GOALS OF PRESENTATION

Charted Traditional or familiar

Slightly Charted

Tried but not norm

Uncharted New or

unfamiliar

Unknown Not yet

discovered

•Removes value judgments and blame

•Not a continuum, but current or historical options •Does not imply it is or isn’t available

•Allows for comparison of where you are and where to go

CHARTING A NEW REALITY

Journey: Recognizing

life is not static

Exploring: identifying

new options and

possibilities

Navigating together:

Sharing responsibility

Our overall compass is

“quality of life”

WHY UNCHARTED WATERS?

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Where we

have been… WHERE WE ARE GOING

Community

Family

Person

REAL LIVES, REAL PEOPLE…

UNCHARTED LIVES

UNCHARTED LIFE COURSE

Healthy & Happy

Friends & Family

Financial Stability

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WHAT WE KNOW:

CHARTED DISABILITY SERVICES

Community

Family

Disability Services

Person with Disability

UNKNOWN VISION FOR THE FUTURE

Healthy & Safe

????????

?????????

WHAT WE WANT:

SERVICES TO SUPPORT REAL LIVES

Community

Family

Person with

Disability

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VISION FOR A FUTURE

Services

Supports

Financing

Healthy & Happy

Friends & Family

Meaningful Activity

For Famil ies with Members with Disabi l i ties

FOSTER OPPORTUNITIES

TO CREATE

A VISION

FOR THE

FUTURE

Individual with Disability: achievement of self-determination, interdependence, productivity, integration and inclusion in all facets of community life

Birth---------Early Child-------School-------Transition-----------------------------------Adulthood------------------------------------Aging

SUPPORTS TO MAKE THIS POSSIBLE

*Families: will be supported in ways that maximizes their capacity, strengths and unique abilities so they can best support, nurture, love and facilitate……

*National Definition for “Supporting Families” (2011 Wingspread)

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OPPORTUNITY FOR SELF-DETERMINED

AND UNCHARTED LIFE

Community

Family

Person with

Disability

Developmental Disability Assistance and Bill of

Rights Act, 2000

• Enjoy the opportunity to live independently,

• Enjoy self-determination,

• Make choices,

• Contribute to society

• Experience full integration and inclusion in the economic, political, social, cultural, and educational, mainstream of American Society.

Caring About

Affection & Self-Esteem

Repository of knowledge

Lifetime commitment

Caring For

Provider of day-to-day care

Material/Financial

Facilitator of inclusion, recreation,

spirituality & meaningful activities

Advocate for support

FAMILY ROLES ACROSS LIFECOURSE

Bigby & Fyffe (2012), Dally (1988), Turnbull et all (2011)

DISCOVERY AND

NAVIGATION

Information and Training

Supports

PEER SUPPORT

NETWORKS

Emotional Supports

DAY-TO-DAY

NEEDS

Services for Daily Needs

CHARTER FOR SUPPORTS

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Information and Training Supports: Knowledge and Skills

Emotional Supports: Mental Health and

Self-efficacy

Day-to-Day Supports: Services for Daily Needs

• Information on disability

• Knowledge about best practices

and values

• Skills to navigate and access

services

• Ability to advocate for services

and policy change

SUPPORTING INDIVIDUALS AND FAMILIES

ACROSS THE LIFECOURSE

Information and

Training Supports: Knowledge

and Skills

Emotional Supports: Mental Health and

Self-efficacy

Day-to-Day Supports: Services for Daily Needs

• Parent-to-Parent Support

• Self-Advocacy Organizations

• Family Organizations

• Sib-shops

• Support Groups

• Professional Counseling

• Non-disability community support

SUPPORTING INDIVIDUALS AND FAMILIES

ACROSS THE LIFECOURSE

Information and

Training Supports: Knowledge and Skills

Emotional Supports: Mental Health and

Self-efficacy

Day-to-Day Supports: Services for Daily Needs

• Self/Family-Directed services

• Transportation

• Respite/Childcare

• Adaptive equipment

• Home modifications

• Financial assistance

• Cash Subsidies

• Short/Long term planning

• Caregiver Supports and training

SUPPORTING INDIVIDUALS AND FAMILIES

ACROSS THE LIFECOURSE

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COMPREHENSIVE, INTEGRATED,

COORDINATED VISION

Pediatrician, Families and Friends,

Faithbased

IDEA Part C, Parents as Teachers,

Health, Headstart

School, Special Education, Health,

Recreation

Vocational Rehab, Health

Employment, College, Military

Disability Services, Health,

Housing, College, Careers

Retirement, Aging System, Health

Community

Family

Person with Disability

FORMAL GOVERNEMENT

DISABILIT Y SPECIFIC NON-GOVERNMENTAL ORGANIZATIONS

PEER TO PEER EXCHANGE PEOPLE HELPING PEOPLE

FORMAL: ORGANIZED PROGRAMS

FAMILY ORGANIZATIONS

CO-OP

INFORMAL: NOT ORGANIZED THROUGH A PROGRAM

NEIGHBORS

EXTENDED FAMILY

FRIENDS

COMMUNIT Y ASSETS ( INFORMAL OR NATURAL) COMMUNITY RESOURCES

BUSINESSES

RELIGIOUS BASED

FORMAL AND INFORMAL

SERVICES AND SUPPORTS

Who funds formal services?

Individual

Out of pocket

Private Health Insurance

Local Government

School Districts

Tax Levees

Mental Health

Child Specific

Developmental Disabilities

State Government

General Revenue

Federal Government

Medicaid and Medicare

Title X: Maternal and Child Health Program

IDEA: Special Education

Social Security

FORMAL SERVICES AND SUPPORTS

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FORMAL SERVICE MAZE: LIFE STAGES

Birth-------Early Child--------School---------Transition------Adulthood------------------------Aging

Community

Family

Person with Disability

Community

Family

Disability Services

Person with Disability

Uncharted with Supports

Charted

FORMAL SERVICE MAZE: CATEGORIES

Pediatrician, Child Care, Parents Day Out, Head Start,

IDEA Part C, Parents as Teachers, Pediatrician

School, Special Education, Doctor, Afterschool Care,

Summer Care, Recreation

Vocational Rehab, Health, Employment, College, Military

Disability Services, Health, Housing, College, Careers

Retirement, Aging System, Health

Organized by “service areas” (districts, county, region)

Eligibility

System specific or program specific

Specifically:

Diagnosis or functional l imitation specific

Formal assessment

Financial

FORMAL SERVICE MAZE:

OTHER THINGS TO KEEP IN MIND

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Fo r Fami l i es

wi th Members

wi th

D i sab i l i ti es

FOSTER

OPPORTUNITIES

TO CREATE

A VISION

FOR THE

FUTURE

INFORMAL:

YOUR OWN BELIEFS AND EXPECTATIONS

FAMILY AND FRIENDS WHO KNOW AND BELIEVE IN YOUR CHILD

INFORMAL/FORMAL:

OTHER FAMILIES WITH CHILDREN WITH DISABILITIES

SELF-ADVOCATES AND/OR ADULTS WITH DISABILITIES

FORMAL

PROFESSIONALS

WHO CAN HELP ME CREATE

A VISION FOR MY FAMILY

ON THE SIDELINES OF ACTIVITIES FOCUSED ON THE CHILD

WAITING ROOMS

RECREATIONAL AND SOCIAL EVENTS

TRAINING AND EDUCATION OPPORTUNITIES

TOPIC OR SKILL SPECIFIC

VOLUNTEERING ON COMMITTIEES OR QUALITY ASSURANCE

ACTIVITIES

EXPLORING A VISION

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FAMILY AND ADVOCACY NETWORKS

MISSOURI FAMILY-TO-FAMILY AND SHARING OUR STRENGTHS

PEOPLE FIRST OF MISSOURI

ARC OF MISSOURI, TASH, FAMILY VOICES, AAIDD

DIAGNOSIS OR DISABILITY SPECIFIC

FAMILY ADVOCATES IN FORMAL ROLES

DMH DDD FAMILY SUPPORT COORDINATORS

BSHCN FAMILY PARTNERSHIP PROGRAM

SYSTEMS OF CARE: PARENT PARTNERS

MENTAL HEALTH: PEER MENTORS

EXPLORING A VISION

EXPLORING A VISION: FORMAL

SERVICES

What is the serv ice called? Targeted Case Management Assist with eligibility for certain services

Develop plans for services

Provide information

Connect to other formal and natural supports

Who provides this suppor t? Service or Support Coordinators

Social Workers

Caseworker

Example of types of systems that provide this serv ice? Early Childhood: First Steps

Health: MoHealth Net

Hospitals: Social Work Department

Social Services: Family Support Division

Developmental Disability: Regional Office or County SB40 Board

Special Health Care Needs: Bureau of Special Health Care Needs

Aging: Area Agency on Aging

MO FIRST STEPS:

SYSTEM POINT OF ENTRY (SPOE)

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MO HEAD START

DMH Division of Developmental Disabilities:

Regional Offices

DEVELOPMENTAL DISABILITY

LOCAL COUNTY SB40 BOARDS

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McDonald

Platte Clay

St. Francois

Iron Madison

Ste. Genevieve

Washington

Gasconade

Osage

Laclede Dallas

Pulaski

Miller

Cole

Moniteau

Hickory

Callaway

Boone

St. Louis City St.

Louis

St. Charles

Reynolds

Perry

Cape Girardeau

Bollinger

Lafayette

Ralls

Livingston

Chariton

Carroll

Saline

Schuyler Scotland Clark Atchison

Holt

Crawford

Christian

Pemiscot

New Madrid

Putnam Mercer

Nodaway Harrison

Worth

Gentry Sullivan Adair Knox

Grundy Lewis

Daviess Andrew DeKalb Linn

Macon Shelby Marion

Buchanan Caldwell Clinton

Monroe Randolph

Pike Ray

Audrain Howard

Jackson Lincoln

Montgomery Cooper

Warren Pettis Johnson

Cass

Franklin Morgan Henry

Benton Jefferson

Bates Maries

Camden St. Clair

Phelps Vernon

Cedar

Polk Dent

Barton

Texas

Dade Webster

Wright Greene

Shannon Jasper

Wayne Lawrence Scott

Stoddard Carter

Mississippi

Douglas Newton

Howell Stone Barry Butler Oregon Ripley Taney Ozark

Dunklin 0

0

75 Miles

75 KM

DHSS HEALTHY CHILDREN AND YOUTH

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DETERMINING SERVICE NEED BASED ON

VISION FOR THE FUTURE

Community

Family

Person with Disability

Community

Family

Disability Services

Person with Disability

Uncharted with Supports

Charted

Community

Family

Disability Services

Person with Disability

Community

Family

Person with Disability

- New realities now that living environment disconnected from supports

- New roles and responsibilities for self-advocates and families

- New Possibilities

VISION FOR COMMUNITY LIVING

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Vision for the Future

Not Yet Discovered

• ?????

Uncharted

• Own home

• Shared Living Space

• Co-op

• Environmental Adaptations

Slightly Charted

• Independent Supported Living

Charted

• Training Centers

• Intermediate Care

• Group Homes

WHERE WILL I LIVE?

ERIC’S HOUSE

• WILL ERIC RENT OR OWN?

• DOES HE WANT TO LIVE IN AN

APARTMENT, TOWNHOME OR

HOUSE?

• SHOULD HE HAVE ROOMMATES?

• HOW MUCH COULD HE AFFORD

FOR HOUSING COSTS?

• COULD HE RECEIVE FINANCIAL

ASSISTANCE FROM HUD OR

LOANS?

• COULD OUR FAMILY AFFORD TO

SUPPORT ANY HOUSING COSTS?

Vision for the Future

Not Yet Discovered

• ?????

Uncharted

• Remote Monitoring

• Assistive Technology

• Time banks

• Human-service coops

Slightly Charted

• Self-directed Services

• Respite

• Micro-boards

Charted

• Staff hired by Provider

WHO WILL SUPPORT ME?

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ERIC’S SUPPORTS

• WHAT WAS THE INTENSITY OF

SUPPORTS ERIC NEEDED?

• WHAT TYPE OF STAFF MADE

SENSE FOR ERIC’S NEEDS?

• WHAT LEVEL OF DAILY SUPPORT

COULD OUR FAMILY PROVIDE?

• WHAT LEVEL OF CONTROL DID

WE WANT OVER WHO HIS STAFF

WERE?

INFORMAL: SUPPORTS:

FAMILY AND FRIENDS

ROOMMATES

HOUSING: SHARED SPACE

ASSISTANCEWITH HOUSING

FORMAL SUPPORTS:

DDD SELF-DIRECTED SUPPORTS COORDINATOR

SUPPORTS COORDINATORS:

DIRECT SUPPORT PROFESSIONALS/PARA PROFESSIONALS

SHARED LIVING

HOUSING: EARNED INCOME AND/OR SOCIAL SECURITY

LOANS AND BANKS

HOUSING AND URBAN DEVELOPMENT

WHO CAN HELP MAKE

COMMUNITY LIVING A REALITY

Vision for the Future

Not Yet Discovered

• ?????

Uncharted

• Healthy Life Styles

• Preventative

• Universal Access

• Comprehensive Community based

Slightly Charted

• Medical Home

• Patient Professional Partnerships

• Provider based

Charted

• Medical Professionals Know Best

• Hospital Based

WHAT ABOUT HEALTH AND

MEDICAL NEEDS?

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INFORMAL: Patient Professional Partnerships

Education on healthy choices and lifestyles

Connections with Others

Spiritual

Recreational

Social

FORMAL Funding

Out of Pocket

Private Insurance

Public Insurance (Medicaid/EPSDT, Medicare)

Services

Behavioral Health Counselors and Therapists

Psychiatrist/Psychologist

Health Medical Professionals Doctors (Routine Care and Specialists)

OT/PT/Speech

WHO CAN HELP MAKE

HEALTHY LIFESTYLES A REALITY

Vision for the Future

Not Yet Discovered

• ?????

Uncharted

• Micro-enterprise

• College/Tech Schools

• Career

• Military

Slightly Charted

• Supported Employment

• Volunteerism

• AmeriCorps/VISTA

Charted

• Sheltered Workshops

• Day Habilitation

WHAT WILL I DO DURING

THE DAY?

Community

Family

Disability Services

Person with Disability

Community

Family

Person with Disability

• New generation growing up alongside peers

• Post-secondary education and Careers

• Economic Self-Sufficiency

• Increased access to social and recreation

• Valued role in community

VISION FOR A MEANINGFUL DAY

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INFORMAL:

FAMILY AND FRIENDS

PERSONAL CONNECTIONS

FORMAL

SCHOOL DISTRICT

(GENERIC) COMMUNITY EMPLOYMENT RESOURCES

VOCATIONAL REHABILITATION

DDD EMPLOYMENT AND YOUTH SPECIALIST

WHO CAN HELP MAKE

A MEANING DAY A REALITY

Vision for the Future

Not Yet Discovered/Uncharted

• Self-determination

• Emotional Well-being

• Personal Development

• Interpersonal Relationships

• Physical and Material Well-being

• Social Inclusion

• Rights

Slightly Charted

• Meaningful Roles

• Normalization

Charted

• Health and Safety

• Guardianship

WHAT ABOUT OUR QUALITY

OF LIFE?

Community

Family

Disability Services

Person with Disability

Community

Family

Person with Disability

VISION FOR A QUALITY OF LIFE

• Building own family and relationships

• Community connections provide quality assurance

• Fostering self-advocacy and self-determination skills leads

to safety and protection

• Focusing on meaning of life beyond interventions and

concrete day-to-day supports

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MEETING NEEDS NOW AND

VISIONING THE FUTURE

Community

Family

Person with Disability

Community

Family

Disability Services

Person with Disability

Uncharted with

Supports

Charted

OUR UNCHARTED LIFE

Division of Developmental Disabil it ies (DDD) Regional Of fice

Administer funds for the Medicaid Home and Community Based Service Waiver (HCBS)

Residential Supports

Day Habi litation Services

SB40 Suppor t Coordinat ion

Yearly Planning

Monitoring of Plan, Service and Funds

Provider:

Companion Model for Residential Support Needs

Individualized Day Habilitation Program for Daily Supports

Specific Staf f

Nurse

House Manager (QDDP)

Companion Staff

Weekend Staff

Daily Staff

NAVIGATING ERIC’S SUPPORTS

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Community Supports

Medical

Educational

Recreational

Spiritual

Social

Parents and Family

Create a vision for his life

Ensure access and quality to services

Advocate for services (DDD, Doctor, Psychiatrist, Hospital, Provider)

Maintain standards of quality of life (housing, clothes, extras)

Continue to connect and build relationships

NAVIGATING ERIC’S SUPPORTS

Life isn’t about how to survive the storm,

but how to dance

in the rain.

- u nk no w n

Be n - S h lo m o , Y. , & Ku h , D . ( 2 0 02) . A l i fe c o u r s e ap p r o ac h to c h r o n ic d i s e as e e p id e m io lo gy : c o nc e p t u a l m o d e ls , e m p i r i c a l c ha l le ng e s and in t e r d is cip l ina r y p e r s p e c t i ve s . I n t e rn a t ion a l Jo u rn a l o f E p id e m io logy , 31 : 2 8 5 - 29 3.

B ig b y, C . , & Fy f fe . C . ( 2 01 2 ) . S e r v ice s a n d Fa m i l ie s Wo rk in g To ge t h er t o S u p p o r t A d u l t s w i t h I n t e l le c t ua l D is a b i l i t y . P ro ce e d in gs o f t h e S ix t h R o u n d t a ble o n I n t e l le c t u al D is a b i l i t y P o l i cy . Bu nd o o r a: L a Tr o b e U n ive r s i t y.

Ca lk ins , C . , We hm eye r, M . , Bac o n , A . , He l le r , T . , & Wa lk e r , H .M . ( 2 01 1) I n t r o d u c t io n to t he s p e c ia l i s s u e o n s c a l ing u p e f fo r t s to p r o m o t e t he s e l f - d e t er minat io n o f p e o p le w i t h d e ve lo p m enta l d i s ab i l i t i e s . E x ce p t ion a l i ty , 1 9 ( 1 ) :2 - 5 .

D a l ley, G . ( 1 9 88) . I d e o lo g ie s o f ca r in g : R e t h in k in g co m m u n i t y a n d co l le c t i v i s m . Bas ing s to ke : M ac M i l lan .

D e ve lo p me nta l D is ab i l i t i es A s s i s t anc e and B i l l o f R ig h t s A c t o f 2 0 0 0 . P u b l i c L aw 1 0 6 - 402 U .S . Co d e 4 2 2 0 0 0 § 1 5 0 01 .

Fam i l y S u p p o r t A g e nd a ( 2 01 2 ) . Bu i ld in g a n a t io n a l a ge n d a fo r s u p p o r t in g fa m i ie s w i t a m e m b e r w i t h in t e l le c t u a l a n d d e ve lo p men t al d is a b i l i t ie s .

F ine , A . , Ko t e lc hu c k , M . , A d e s s , N . , & P ie s , C . ( 2 0 0 9) . P o l icy b r ie f . A n e w a ge n d a fo r M C H p o l icy a n d p ro g ra m s : I n t e g ra t in g a l i fe co u rs e p e rs p e ct i ve . M ar t ine z , CA : Fam i l y, M at e r na l , and Ch i ld He a l t h P r o g r am s Co nt r a Co s t a He a l t h S e r v i c e s .

Hu t c h is o n , E .D . ( 2 0 07) . A L i fe c o u r s e p e r s p e c t i ve . I n Hu t c h is o n , E .D . , D im e n s ion s o f h u m a n b e h a v io r : T h e ch a n g in g l i fe co u rs e ( 4 t h e d , p p . 1 - 3 8 ) . T ho u s and Oak s , CA : S AGE .

Ku h , D . , Be nS h lo m o , Y. , Lync h , J . , Ha l lqv i s t , J . , & P o w e r, C . ( 2 0 0 3) . L i fe c o u r s e e p id e m io lo gy. Jo u rn a l o f E p id e m io lo gy a n d C o m m un i t y He a l t h , 57 ( 10 ) : 7 7 8 - 783.

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Sel tzer , M. M. (1 9 8 5 ) . In fo rmal suppo r ts fo r ag ing menta l l y retarded perso ns .

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p ro fess iona ls, and except io na l i ty : Po s it ive o utco mes thro ugh par tnersh ip and t rus t .

Bo sto n MA: Pearso n .

REFERENCES (CONTINUED)

Sheli Reynolds

reynoldsmc@umkc.edu

816.235.1759

CONTACT INFORMATION