LifeCourse Thinking andDD Council Strategic Planning

Michelle “Sheli” Reynolds, SIB, PhDCo-Director National CoP on Supports to FamiliesUMKC, Institute for Human Development, UCEDD

June 30, 2015

Key Areas of Learning• Introduce the LifeCourse framework that is being used to

change conversations at all levels for systems change• Share how the Missouri DD Council used the framework

and tools to guide its strategic thinking over the last year • Provide concrete ideas on how framework can impact

strategic planning for a DD Council 5-year state plan• Discuss activities happening within the 6 states of the

Community of Practice on Supporting Families.

Project GoalTo build capacity through a community of practice across and within States to create policies, practices and systems to better assist and support families than include a member with I/DD across the lifespan.

Project Outcome• State and national consensus on a national framework and agenda for improving

support for families with members with I/DD.• 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.

DCCT MO TNWA

OK

Funded by

National Partners

5

People with disabilities and their families have the right

to live, love, work, play and pursue their life

aspirations just as others do in their community.

What we know about current realities?

6

Expectations, Values, Culture

Capacity of Work Force

Federal Budget

Demand for Services

Community

Person with

Disability

Federal Policy

Transforming Services and Supports

Focus on “ALL”ALL individuals and their families are considered in our values and vision.

(Family is defined by the Individual)

100%

Focus on “ALL”

100%

All 4.9 Million people with developmental disabilities

** Based on national definition of developmental disability with a prevalence rate of 1.49%

75%

National % Receiving State DD Services

25%

Of the 25% receiving services57.9% live within the Family Home

1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011

Nursing Home

24144 25533 32195 35155 34820 35005 32899 30027 28206 26013 26080 29608 31832 33661

16+ 89348 82718 82582 77180 72742 72474 69148 66501 66125 62496 59447 59604 57028 55572

7 to 15

53940 52863 52818 54333 54031 54325 58503 52888 56572 59002 53198 58235 55682 57486

1 to 6

108844 114546 124469 135322 135571 135569 142918 156610 157082 157765 160477 158621 167874 172769

Host Home

28122 31884 37367 40688 42272 45759 39857 35386 35302 36972 38262 40967 40060 44214

Family

325650 355192 391859 451677 482479 500004 503641 533048 569020 576163 588594 599152 592180 610299

Own Home

62669 65006 73147 80242 86694 90597 107157 101143 104386 115659 115873 122088 127455 120313

100,000

300,000

500,000

700,000

900,000

1,100,000

57.9%

Arizona 86%Calif. 71%Florida 70%Idaho 75%*S.C. 72%*N.J. 71%

Place of Residence for Service Recipients with IDD 1998 - 2011

RISP 2011RTC on Community Living UCED U of Minnesota

Mo DDC Thinking About Initiatives

13%65%(62,498)

Enrolled HCBS DD Services

State DD ServicesTargeted Case Management

19%

Based on 1.58% prevalence of 3.815 million citizens, US Census

95,498 estimated Missourians with Developmental Disabilities

3%

ICF/DD

All individuals live within the context of a family

Family is defined by the person andIncudes members regardless of where they live

Goal of Supporting Families

Family Life Cycle

Developing Person Centered Systems and Policy within the Context of Family

Individual Life Cycle

Thinking Across all Life Domains

Daily Life and Employment(education/employment, life skills)

Community Living(housing, transportation, community access)

Social and Spirituality(friends, relationships and leisure activities)

Healthy Living(medical, behavioral and mental health, wellness, nutrition)

Safety and Security(emergencies, legal, well-being, guardianship and alternatives

Citizenship and Advocacy(leadership, peer support, making choices, setting goals)

Think Across Life Stages and GenerationsAge 0-5 6-18 19-64 65

MD Total Population

368,201 (6.2%)

1,348,093(22.7%)

3,426,651(57.7%)

795,790(13.4%)

DD MD(1.58%) 5,817 21,299 54,141 12,573

Known or Active in MD DDA

314 4911 21,897 1,438

Based on 1.58% prevalence 5,938,737 citizens, US Census 2013

Based on May 2015 Data from MD DDA

Trajectory towards Good Life

Trajectory towards Outcomes

Trajectory towards things unwanted

Friends, family, self-determination, community living, social capital and

economic sufficiency

Vision of What I Don’t Want

Focusing on Life Experiences

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

“Anticipatory Guidance for Life Experiences”

“Chores and allowance”

“Birthday parties with friends”Learning to say “no”

“Playing sports or an instrument”

“Volunteering at church” “Making mistakes”

The Star: Integrating Supports

Person or family resources, abilities,

strengths, characteristics

Family, friends, neighbors, co-workers, community

members, church members

School, businesses, Church/faith based, public transportation,Parks and recreation

Disability Services,Special Education

Medicaid, Housing,

Food Stamps, Vocational rehabi-pad/smart phone apps,

remote monitoring, cognitive accessibility,

adaptive equipment

Mapping Strategies for Supporting Families Across the LifeCourse

Discover & Navigation Connecting &

Networking

Goods &Services

There must be opportunities for Self-Advocates and Families to Engage, Lead, and Drivetheir Own Supports and

Impact Policy and Systems Change

EXPLORING AND CREATING UNIVERSAL STRATEGIES FOR TRANSFORMATION

LIfeCourse Framework

23

a Life

Birth

SchoolSSI

Trajectory toward life

Disability path

LABELEDWORLD

• Poverty • Special

programs • Depend upon

public funding • Isolation – even

segregation

Human Service Path

Adulthood

Guardianship

Medical spend

down

Washington Community of Practice Adapted from National CoP Supports to Families, 2015

ALL: Public Health Framework

Medical System

Flu Shot

Hand WashingAnti-Bacterial Soap

Constructing Universal Strategies for Supporting Families Across the LifeCourse

Eligibility Based Supports

-Family and Self-Advocacy Networks-Inclusive education with supports-Adaptive equipment -Problem Solving and Life Navigation

-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 and accepting spiritual and recreational opportunities

DD Council Planning and Activities Using Universal Strategies for Supports Across LifeCourse

Initiatives, projects or policies that focus on

person centered supports within the context of families within Long Term

Servicesand Supports

Initiatives, projects or policies to enhance or

build Public-Private Partnerships that support

across LifeCourseInitiatives, projects or policies

focused on enhancing communities and/or creating

social awareness on supporting families

???? ??

PUTTING FRAMEWORK IN ACTION TO ENHANCE PEOPLE’S LIVES

LifeCourse Framework

Applying the STAR: Individual Level

Meet Ben

Ben’s Life Trajectory

Ben’s

I-pad, apps, Facebook,Facetime, Digital watch, Vibrating toothbrush, Glasses

Omni bus, Walmart, 24 Hour Fitness, library, Price Chopper, Dr. T., St. Ann’s church, ES Fire Dept, joint bank account, direct deposit, Power of attorney

Dad, Mom, Matt, Zac, Ali, Chad,

Ericka, Sheli,Firemen friends,Ange, Pam, Wally, Josh B., Matt S., Mike, Nick, Scouting friends

PCA –DDD, self-directed supportsSocial Security,Medicaid, SpecialNeeds Trust

Outgoing personality, friendly, Eagle Scout,

can ride city bus

Ben’s Integrated Services and Supports

Ben’s Integrated Supports Weekly Schedule

PUTTING FRAMEWORK IN ACTION TO THINK ABOUT PROJECTS AND ACTIVITIES

LifeCourse Framework

Oklahoma Reframing Wait List Discussion

Information about Oklahomans with DD on Waiting List

0-5 6-18 19-64 65+ Total Details

624 2579 3714 59 6,976 Names on Waiting List

114 620 850 11 1,695 On list, No known public benefits

510 1959 2864 48 5281 On list, Getting Some Public benefits

Trajectory Towards Employment

PovertyNo opportunities

Sheltered EmploymentDependence on Govt

EducationCareer

Job of ChoiceEconomic Sufficiency

$ for Home & Fun

Applying the STAR: Project Level

Connecticut Systems Change

Projects Organized by 3 Buckets

Discover & Navigation Connecting &

Networking

Goods &Services

Tennessee

Communication Tools for Reframing(e-newsletter, magazine, folder, website, social media)

Missouri

Consistent Message Across the LifeSpan• Family to Family at Missouri UCEDD

• Early Childhood, Part C• School Districts, Special Education

• PNS Show Me Career Grant Pilot Sites• State Division of Developmental Disability

• Special Health Care Needs

Partnering to Change “The Letter”

Show Me Pilot Community organizations all recognized this as something important to them

Partnered with F2F to use Alternative to Guardianship materials

Getting the right materials into the hands of the people on the front line who could get them to families

Peer Support Practices

• Tennessee: Created sub-committee enhancing, connecting and sustaining

• District of Columbia: State has contracted with P2P USA to assist in starting chapter

• Washington: Adult Sibling Focus group• Connecticut: Hosted Parents with

Disabilities conference

Leadership Development

• Oklahoma: Statewide Joining Forces Family Leadership Conference and Rural Leadership Institutes and Partners in Policymaking

• District of Columbia: Family and Self-Advocacy Stipends, Advocacy Training with Georgetown

• Connecticut: Facilitating bringing together Family and Self-Advocacy Networks

USING FRAMEWORK FOR PREPARING FOR DD COUNCIL STATE PLAN

National Community of Practice States

“I do not see the CoP as separate from the preparation we are doing for the State Plan. I hope the culture will be second nature to the State Plan and inform the goals and objectives we adopt. The information and data we gather from the CoP will become part of the comprehensive analysis for the state plan.”

Ed Holen, Washington DD Council

CoP Impact on Washington DD Council

• Created a culture or atmosphere here where the ideas are being integrated into everything we are doing, both inside the system and outside the system. The more we talk and share about the concepts the more people are catching on. This influences:– New IFS Waiver and its services– Services to the 5,000 we will be bringing into services over the next year, – Development of the Community First Choice Option– DD Administration focus on front door and person centered planning before they come

for their annual needs assessment. • Strategies we adopt to collect feedback from specific groupings of families

– Listening to senior family caregivers (through a survey we conducted) – Adult siblings (through two focus group discussions) – Parents who themselves have a developmental disability (through a meeting of parents

we hosted)• Provide tools and information to “information carriers”, i.e. those out there, again in the

system and out of the system, who carry information and pass it along to individuals and families. This effort is being carried out in partnership with the DD Council’s communication project called Informing Families. Information is power for people and families.

CoP Impact on Tennessee DDC Survey

• Focusing Questions on Universal Strategies:– Ability to access generic community resources/businesses – Useful in local communities

• What is working well and what wasn’t in their local communities…(building on Michael Smull around person centered organizations)

• Specifically asked about investment in best practices for supporting families (both those who do and do NOT receive disability services)

• Getting Feedback from 75% – Asked people responding to the survey if they knew of any other

groups– Multicultural Alliance on Disability to get survey out

Tennessee 5 Year Survey5. Overall how would you rate the availability of traditional disability services in your local community? (organizations that provide services to people with disabilities like: day programs, supported employment, therapies, residential services, etc.) 6. Thinking about your local community, how would you describe the availability of generic community businesses and services that ALL citizens use that are welcoming to persons with disabilities and their families? (For example: your local library, recreational leagues, grocery stores, pharmacy, fast food restaurants, the local vacuum repair store ...) 7. If the Council could address one specific need in your local community that would impact people with disabilities and their families, what need would you recommend we work on? 8. From the following list, please rank the listed priorities for the disability community in Tennessee in order from most important to you (1) to least important to you (12). Employment (jobs in the community at or above minimum wage) Inclusive recreation and leisure opportunities Accessible and affordable housing Self-advocacy training and grassroots development Leadership development for people with disabilities, family members and professionals Inclusive education (includes early intervention services and postsecondary education) Accessible and useful transportation Accessible and affordable health care Inclusive child care Public policy advocacy Public information and awareness Investment in best practices for supporting families (both those who do and do NOT receive disability services)

9. Thinking about your local community, please describe any unserved or under-served groups…who are they? How have they been overlooked? 10. Thinking of your local community, please describe what is working well, as far as both traditional services from the disability service system and generic community services for you and your family. Then please describe what is NOT working well.

USING FRAMEWORK FOR OVERALL STRATEGIC THINKING

Missouri

DD Act Priority Areas and LifeCourse Domains

Projects by Life Stages and Domains

Projects by Life Domains, 3 Support Buckets and Integrated Star

Thinking About Content Expertise

Review Past 5 Year Plan Goals

Initial Exploration with Members

Needs Assessment and Data Sources

Putting the Framework Together!!

Questions or Comments?

• Sheli Reynolds • reynoldsmc@umkc.edu• 816-235-1759