LifeCourse Ambassador Educational Webinar Series: Focus on ALL October 11, 2016 National Community of Practice for Supporting Families
Project Goal To build capacity through a community of practice across and within States to create Project Outcome policies, practices and systems to better assist and support • State and national consensus on a national framework families that include a and agenda for improving support for families with member with I/DD across members with I/DD. the lifespan. • Enhanced national and state policies, practices, and sustainable systems that result in improved supports to families. • Enhanced capacity of states to replicate and sustain exemplary practices to support families and systems. Funded in 2012 by
National Partners LifeCourse Ambassador Educational Webinar Series What it is What it is not
An opportunity to: The series is NOT:
Enhance and broaden your A “train-the-trainer” (doesn’t understanding of each of the enable you to teach other LifeCourse Framework Principles LifeCourse trainers) Build your confidence and capacity to share the LifeCourse The LifeCourse “certification” Framework Principles with a process variety of stakeholders and audiences. Open to the public – this is for invited participants ONLY (do Learn ways to use the LifeCourse not share links etc) principles for strategic thinking Development of LifeCourse Framework Adapted from Title V Maternal Child Health Block Grants Life Course Health Development Model Rethinking MCH: The Life Course Model as an Organizing Framework 2010
Today’s experiences and exposures influence tomorrow’s health
Health trajectories are particularly affected during critical or sensitive periods
The broader community environment–biologic, physical, and social –strongly affects the capacity to be healthy
While genetic make-up offers both protective and risk factors for disease conditions, inequality in health reflects more than genetics and personal choice Example of Life Course Health Development Model: Heart Disease
Adult Lifestyle Model Change current behaviors Smoking Diet Exercise Alcohol consumption Life Course Perspective Biological and Social Factors Starting at pregnancy and building throughout lifespan
Kuh, D. et al (2003) Life course epidemiology. Understanding the “Differences”
Based on Theory Our Name
Supporting Families LifeCourse Life course vs. LifeCourse framework, developed from the Life span vs. Life Course principles of the National CoP on Supporting Families Life course Health Development Model Charting the LifeCourse framework and tools, developed by UMKC-IHD, UCEDD MoF2F
Shortened version “LifeCourse” Guiding Principles of the Supporting Families LifeCourse Framework Type of Change that is Needed
Transitional Change Transformational Change
“Retooling” the system and its Fundamental reordering of practices to fit the new model thinking, beliefs, culture, relationships, and behavior Mergers, consolidations, reorganizations, revising Turns assumptions inside out systematic payment structures, and disrupts familiar rituals and structures Creating new services, processes, systems and products Rejects command and control to replace the traditional one relationships in favor of co- creative partnerships
Creating Blue Space, Hanns Meissner, 2013
Trajectory towards Good Life Adapting and Accommodating Friends, family, Life Experiences enough money, Across Life Stages job I like, home, faith, vacations, health, choice, freedom
Vision of What I Don’t Want ALL: Reframing Our
Traditional Understanding Core Belief: All people and their families have the right to live, love, work, play and pursue their life aspirations in their community.
14 ALL People Live in Context of Family and Community
Everyone exists Traditional Integrated Services within the context Disability Services and Supports within of family context of person, and community family and community Thinking of ALL People with I/DD
25% 100% 75%
4.7 Million National % people with Receiving State developmental DD Services disabilities
** Based on national definition of developmental disability with a prevalence rate of 1.49% All Members of the Family ALL Individuals Exist Within the Context of Family
• Family is defined by the individual
• Individuals and their family may need supports that adjust as roles and needs of all members change
• Not dependent upon where the person lives “Good Life Outcomes for ALL ”
The Individual will achieve self-determination, interdependence, productivity, integration, and inclusion in all facets of community life Families will be supported in ways that maximize their capacity, strengths, and unique abilities to best nurture, love, and support all individual members to achieve their goals Recognizing Family Diversity
Biologically: Likes, dislikes, Socially: Family and friend skills, abilities network, connection with community members
Policy: Environmentally: Dreams, Aspirations, Neighborhood, socio-economic, House rules, cultural rules, education expectations Where do People Live? TOTAL 4.7 MILLION PEOPLE WITH IDD Own or With Family Residential Supports
89% living in own homes and/or are supported by family
Anderson, L.L., Larson, S.A., Kardell, Y., Hallas-Muchow, L., Aiken, F., Hewitt, A., Agosta, J., Fay, M.L., & Sowers, M. (2015). Supporting Individuals with Intellectual or Developmental Disabilities and their Families: Status and Trends through 2013. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration. Reciprocal Roles of ALL Family Members
Affection & Self-Esteem Caring About Repository of knowledge Lifetime commitment Provider of day-to-day care Material/Financial Caring For Facilitator of inclusion and membership Advocate for support *Adapted from Bigby & Fyffe (2012), Dally (1988), Turnbull et all (2011) Recognizing Family Cycle and ALL Members Life Stages Individual Life Stages
Family Life Cycle National Sibling Leadership Network ALL LifeCourse Triangle Marylanders with I/DD
93,830 estimated Person with Developmental Disabilities 17% 71% 12%
Enrolled State DD Services Active or Wait List
Based on 1.58% prevalence 5,938,737 citizens, US Census 2013 Based on May 2015 Data from MD DDA MD Wait List- 11,312 and MD DD Paid Services- 15,892 Individuals in DC with I/DD 9,632 individuals estimated to have Developmental Disabilities* 23% (2,228) 77% (7,404)
Receiving DDS Services
Inside the State System Living independently or with family 796 Not Receiving IDD Waiver 1,655 DDS Services ICF/IDD 330 Waiting List 0 *Based on 1.49% prevalence, S. Larson, University of Minnesota (2013) How to Make an ALL Triangle
Gain access (register and sign in) to the “closed” members only area of supportstofamilies.org website
Go to the “Resources” section, “Strategic Planning Tools and Templates”
Find the instructions for completing your “ALL Triangle”
Each state’s template is loaded and ready to fill out (some are already completed)
Can customize to other types of triangles ”HOW TO” Make Your Triangle (2-part)
1) Find your state’s or county’s total population according to the latest census.
2) Take the total population number and multiply it by (.0155) 1.55% (the prevalence rate accepted by the Community of Practice). Place this number in the top line below the title of slide in your PowerPoint template. * 3) Using the State of the States report (found at http://www.stateofthestates.org/), you can find the number of people in your state receiving services. Divide this number by the total population of individuals with DD you determined in step 2. That will give you the percentage to type into the right portion of the triangle. 4) Subtract the percentage you calculated in step 3 from the 100%. This will give you your estimated percentage of individuals unknown to the service system. Type this percentage on the left, in larger portion of the triangle. * Please note, some of the Triangle examples shown in this PowerPoint were created with a prior accepted prevalence rate(s), but moving forward, the CoP has adopted the 1.55% (.0155) prevalence rate. State with DD
?? people with developmental disabilities 25% 75%
% Receiving State DD Services*
Not Known to DD State System *Based on Braddock et al, (2015) State of States in I/DD ”HOW TO” Make Your Triangle (3-part)
1) Find your state’s or county’s total population according to the latest census.
2) Take the total population number and multiply it by (.0155) 1.55% (the prevalence rate accepted by the Community of Practice). Place this number in the top line below the title of slide in your PowerPoint template. 3) Using data from your state DD Agency or local DD entity, find out the number of people receiving paid DD services. Divide this number by the total population of individuals with DD you determined in step 2. That will give you the percentage to type into the far right portion of the triangle. 4) Using data from your state DD Agency or local DD entity, find out the number of people ONLY receiving Targeted Case Management or are on the waiting list. Divide this number by the total population of individuals with DD you determined in step 2. That will give you the percentage to type into the middle slice of the triangle. 5) Add the percentages of people identified in steps 3 and 4 together. Subtract them from the 100%. This will give you your estimated percentage of individuals unknown to the service system. Type this number on the left, in larger portion of the triangle. State with DD ?? estimated State with Developmental Disabilities* % % % Paid DD TCM or Services (??) Wait list
Not Known to DD State System State Specific Data
*Based on 1.55% prevalence of ?? million citizens, US Census (2015) Things to Remember
Cite exactly the state/county data source and year. Since different data sources might have different numbers it is important to justify where your numbers come from.
Right hand sections (both the TCM/Wait list and/or Services) should be based on the way the state “defines” their data. (It is possible to show only “those in/known to services”, OR divide into more sections based on how the state collects data.)
Your state or county’s “All” Triangle may be developed based on specific target populations. Alabamians with DD ?? estimated Alabamians with Developmental Disabilities* % % % Paid DD TCM or Services (??) Wait list
Not Known to DD State System State Specific Data
*Based on 1.55% prevalence of ?? million citizens, US Census (2015) Strategic Planning Tools Focusing on ALL Missourians with DD 96,122 estimated Missourians with Developmental Disabilities* 65% 17% 18% Targeted Paid DD Case Services (62,087) Management Not Known to DD State System As Reported by MoDDD (May 2016) Total State DD: 33,315 TCM Only: 16,210 TCM Plus Paid DD: 17,107 Of Paid DD, Residential: 7,012 Of Paid DD, State ICF/DD: 360 *Based on 1.58% prevalence of 6.1 million citizens, US Census (2015) “ALL” Life Stages and Generations Missouri
Age 0-5 6-18 19-64 65
Total MO 362,650 1,045,641 3,747,386 888,537 Population (6%) (17.3%) (62%) (14.7%)
Approx. DD 5729 16,521 59,209 14,038 (1.58%) Changing the Conversation (OK)
Focus on the All 16% 11% (9,777) 73% (6,980) 27% under 21 yrs. 73% 22 yrs. + (estimated) (44,515) Served by DDS Inside the State System State Funded (group homes, assisted living, 1244 employment & respite) Waiting for Homeward Bound (class members) 683 DDS services Community Waiver 3026 In-Home Supports Waiver (Adults & Children) 1870 Family Support Assistance Payment ($250) 2077 Money Follows the Person (recent transitions) 211 *Based on 1.58% prevalence of 3.878 citizens US Census (2014) Reframing Wait List Discussion in Oklahoma
Information about Oklahomans with DD on Waiting List
0-5 6-18 19-64 65+ Total Details
Names on 624 2579 3714 59 6,976 Waiting List On list, No 114 620 850 11 1,695 known public benefits On list, Getting 510 1959 2864 48 5281 Some Public benefits Oklahoma: Waiting – Life Stages
Other Serv. Life Stage # Waiting Medicaid No Services Including SSI
Infancy (0-3) 142 94 114 28
Early Childhood (4-6) 374 269 299 75
School Age (7-18) 2,675 1,795 2,030 645
Transition (19-21) 762 455 544 218
Young Adult (22-35) 2,224 1,369 1,627 597
Midlife Adult (36-64) 1,002 621 738 264
Senior Citizen (65+) 75 54 63 12 Snohomish County with I/DD 11,785 estimated Person with Developmental Disabilities 23% 63% 14%
Enrolled State DD Services No Paid Service Case load
Based on 1.58% prevalence of 745,913 citizens, US Census No paid service case load- 1,651 Enrolled in services, 2,726 paid DDA service “ALL” Life Stages and Generations Washington/Snohomish County Age 0-5 6-18 19-64 65
WA Total 446,319 1,150,667 4,428,326 948,428 Population (6.4%) (16.5%) (63.5%) (13.6%)
DD WA 7,096 18,295 70,410 15,080 (1.58%)
Snohomish 47,026 127,642 484,443 87,334 County (6.3%) (17.1%) (64.9%) (11.7%)
DD Sno. 747 2,029 7,702 1,388 (1.58%) “ALL” Life Stages and Generations Template Age 0-5 6-18 19-64 65
State Total ?? ?? ?? ?? Population (%) (%) (%) (%)
DD State ?? ?? ?? ?? (1.58%)
Known or Active in ?? ?? ?? ?? State DD Based on 1.55% prevalence ?? citizens, US Census 2013 Based on ?? Data from ?? Single population, like individuals with Autism or aging Examples All disabilities and then of Other comparing differences within the category ALL Aging Triangles Recipients of employment services
Where people live (at home with family, residential supports, etc)
How people get education MCH - Focusing on ALL All 14.6 Million children with special health care needs 78% 22%
National % Receiving Title V Services
Child and Adolescent Health Measurement Initiative (2013). “Who Are Children with Special Health Care Needs (CSHCN) MCH - Focusing on ALL in Kansas All 923,478 children in Kansas 79% 21%
Kansas % with Special Health Care Needs
2009/10 National Survey of Children with Special Health Care Needs CSHCN Prevalence and Demographics
Where People with I/DD Live 4.7 million estimated People with Developmental Disabilities* 12% 11% 75% 528,000 672,000 Out of Home (3,500,000) Receives Services Services Living at Home Not Receiving Services Living at Home
*Based on 1.55% prevalence of 6.1 million citizens, US Census (2015) Missouri K-12 Students ?? Elementary/Secondary Students in Missouri
??% Students in ??% with General Education IEP’s
Breakdown by IDEA categories Universal “ALL” Strategic Thinking ALL: Public Health Framework
Medical System
Flu Shot
Hand Washing Anti-Bacterial Soap Universal Strategies for Supporting Good Lives for ALL
LTSS Delivery Areas Focusing on Family HCBS Waivers and State Services Person Centered Planning and ISP Front Door (Intake) Paid Family Caregiver or Support Staff Relationship-Based Models for Community Living (Shared Living) Enhancing Provider-Family Partnerships Universal Strategies for Supporting Good Lives for ALL
DD Services
• Parent to Parent/Peer Support • Family, Self-Advocacy & Sibling Networks • Inclusive education with supports • Adaptive equipment & Accommodations
• Universally designed and affordable homes • Grocery carts for older kids • EMT and Police knowledgeable and supportive • Strong families and friends to share lives with • Inclusive, accepting spiritual and recreational opportunities Comprehensive, Integrated & Coordinated Systems Across Life Domains & Stages Pediatrician, Families and Friends, Faith based
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 Joining Forces for a New Vision
1950s Mom------Parent-----Family Movement 1970s Self-Advocacy and Independent Living Movements (Nothing about me, without me!) 2000s Siblings Movement
1960s Medicaid and Medicare Established 1980s Medicaid Waiver (Community Supports) 2010s Affordable Care Act
1970s Rehab Act: 504 Plans 1975s Education for All Children 1990s IDEA and ADA
2000’s Community and Society ALL for Specific Policies & Practices Focusing on Support Coordination Jackson Countians (Mo) with DD 10,658 estimated Jackson Countians with Developmental Disabilities* 17% 18% 65% Targeted Paid DD Case Services (6,928) Management Not Known to DD State/County System People in Jackson County (estimated) Receiving TCM Only: 1,812 (17%) Receiving Paid DD Services: 1,918 (18%) 24/7 Paid Services: ???? Limited/Capped Services: ????
*Based on 1.55% prevalence of 687,623 citizens, US Census (2015) EITAS: ALL Known People with I/DD “Service Coordinator” Practices Strategic Thinking: Focus on ALL Strategic Thinking: Focus on ALL Strategic Thinking: Focus on ALL Strategic Thinking: Focus on ALL Questions, Reflections, Ideas?? Homework
Create your own 100% triangle Specific to your state, county, region OR group/agency Can be a “two-part” or “three-part” triangle
Submit to Katharine by December 1
Completed homework is your “ticket” to the next LifeCourse Ambassadors session NEXT TIME
December 13, 2016 @ 1:00pm Central
Focusing on Trajectory
Remember: Homework (due Dec 1) is the ticket to get the link!!!