navigating the maze: mapping supports for your life...
TRANSCRIPT
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
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?
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
10
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
VISION FOR A FUTURE
Services
Supports
Financing
Healthy & Happy
Friends & Family
Meaningful Activity
For Families with Members with Disabilities
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)
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
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
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
DISABILITY 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
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 limitation specific
Formal assessment
Financial
FORMAL SERVICE MAZE:
OTHER THINGS TO KEEP IN MIND
For Fami l ies
wi th Members
wi th
D isabi l i t ies
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
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 service cal led? 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 support? Service or Support Coordinators
Social Workers
Caseworker
Example of types of systems that provide this service? 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)
MO HEAD START
DMH Division of Developmental Disabilities:
Regional Offices
DEVELOPMENTAL DISABILITY
LOCAL COUNTY SB40 BOARDS
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
38
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
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?
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?
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
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
52
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 Habilitation Services
SB40 Support Coordination
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
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 n k n ow n
B en - S h lom o , Y. , & Ku h , D . ( 2 0 02) . A l i f e c o u r se a p p ro a c h to c h ro n ic d i sea se ep id em io lo gy : c o n c ep t u a l m o d e ls , em p i r i c a l c h a l len g es a n d in te r d i sc ip l ina r y p e r sp ec t i ves . I n te r nat iona l Jou r n a l o f E p i d e m io logy , 31 : 2 8 5 -293 .
B ig by, C . , & F y f fe . C . ( 2 01 2) . S e r v i c e s a n d Fa m i l i es Wor k i n g Tog et h e r to S u p p or t A d u l t s w i t h I n te l l e c t ua l D i s a b i l i t y. P r oc ee d in gs o f t h e S i x t h Rou n dt ab l e on I n te l l ec t ua l D i s ab i l i t y P o l i c y. Bun d oo r a : L a Tro b e Un ive r s i t y .
C a lk in s , C . , Weh m eyer, M . , B a c o n , A . , H e l le r, T. , & Wa lke r, H . M . ( 2 011) I n t ro d u c t ion to t h e sp ec ia l i s su e o n sc a l in g u p e f fo r t s to p ro m o te t h e se l f - d ete r m in a t ion o f p eo p le w i t h d eve lo p m en t a l d i sa b i l i t ies . E xc e p t i ona l i t y , 1 9 ( 1 ) :2 -5 .
Da l ley, G . ( 1 9 88) . I d e o l og ie s o f c a r i n g : Ret h i n k i ng c om m u n i t y a n d c o l l e c t i v i sm . B a s in g s to ke : M a c M i l lan .
Deve lo p m en t a l D i sa b i l i t i es A ss i s t a n c e a n d B i l l o f R ig h t s Ac t o f 2 0 00 . P u b l i c L aw 10 6 -402 U . S . C o d e 4 2 2 0 0 0 § 1 5 001 .
Fa m i l y S u p p o r t A g en d a ( 2 01 2) . B u i l d i n g a n a t i ona l a g e n da f o r s u p p or t i ng f a m i i es w i t a m e m b e r w i t h i n te l l ec t ua l a n d d eve l op m en ta l d i s ab i l i t i es .
F in e , A . , Ko te l c hu c k , M . , A d ess , N . , & P ies , C . ( 2 0 09) . P o l i c y b r i e f . A n ew a g e n da f o r M C H p o l i c y a n d p r og r am s : I n te g r a t in g a l i f e c ou r s e p e r s p e ct i ve . M a r t in ez , C A : Fa m i l y, M a te r n a l , a n d C h i ld H ea l t h P ro g r a m s C o n t r a C o s t a H ea l t h S e r v i c es .
H u t c h i so n , E . D . ( 2 0 07) . A L i fe c o u r se p e r sp ec t i ve . I n H u t c h i so n , E . D . , D i m e n s ion s o f h u m a n b e h av i or : T h e c h a n g i ng l i f e c ou r s e (4 t h ed , p p . 1 - 3 8 ) . T h o u sa n d Oa k s , C A : S AG E .
Ku h , D . , B en S h lom o , Y. , Ly n c h , J . , H a l lq v i s t , J . , & Power, C . ( 2 0 03) . L i fe c o u r se ep id em io lo gy. Jou r n a l o f E p i d e m i o l og y a n d C om m u n i t y H e a l th , 57 ( 10) : 77 8 -783 .
REFERENCES
Missour i Fami ly to Family (2012) . Char t ing the l i fe course: A guide for ind iv iduals ,
fami l ies , and professionals . Kansas C i ty, MO: Inst i tute for Human Development ,
Univers i ty o f Missour i -Kansas C i ty.
Lakin , C . , Larson, S . , Salmi , P. , & Webster, A . (2010) . Res ident ial ser v ices for persons
with developmental d isabi l i t ies : Status and t rends through 2009. Inst i tute on
Community Integrat ion, Minneapol is , MN.
Nat ional Gateway to Sel f -Determinat ion (2011) . Research to pract ice in se l f -
determinat ion ser ies . Nat ional Tra in ing In i t iat ive on Sel f -Determinat ion and the
Associat ion of Univers i ty Centers on Disabi l i t ies .
Hareven, T. (2000). Famil ies, h is tor y, and soc ia l change: L i fe course and c ross -cul tura l
perspect ives. Boulder, CO: Westv iew Press .
R i ley, M. W. , & Ri ley J r, J . W. (1996). Generat ional re lat ions : A future perspect ive .
A g ing and Generat ional Relat ions : L i fe -course and Cross -cul tura l perspect ives , 283 -
291 .
Sel tzer, M. M. (1985) . Informal suppor ts for ag ing mental ly retarded persons .
American journal o f mental def ic iency, 90(3) , 259.
Turnbul l , A . , Turnbul l , R . , E r win , E . , Soodak , L . , & Shogen, K . (2011) . Famil ies,
professionals , and except ional i ty : Pos i t ive outcomes through par tnership and t rust .
Boston MA: Pearson.
REFERENCES (CONTINUED)
