LifeCourse Thinking and DD Council Strategic...
Transcript of LifeCourse Thinking and DD Council Strategic...
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
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
Family
Social Services
Person with Disability
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
Own Home 62,669 65,006 73,147 80,242 86,694 90,597 107,157 101,143 104,386 115,659 115,873 122,088 127,455 120,313
Family 325,650 355,192 391,859 451,677 482,479 500,004 503,641 533,048 569,020 576,163 588,594 599,152 592,180 610,299
Host Home 28,122 31,884 37,367 40,688 42,272 45,759 39,857 35,386 35,302 36,972 38,262 40,967 40,060 44,214
1 to 6 108,844 114,546 124,469 135,322 135,571 135,569 142,918 156,610 157,082 157,765 160,477 158,621 167,874 172,769
7 to 15 53,940 52,863 52,818 54,333 54,031 54,325 58,503 52,888 56,572 59,002 53,198 58,235 55,682 57,486
16+ 89,348 82,718 82,582 77,180 72,742 72,474 69,148 66,501 66,125 62,496 59,447 59,604 57,028 55,572
Nursing Home 24,144 25,533 32,195 35,155 34,820 35,005 32,899 30,027 28,206 26,013 26,080 29,608 31,832 33,661
0
200,000
400,000
600,000
800,000
1,000,000
1,200,000
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
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 Generations
Age 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% prevalence5,938,737 citizens, US Census 2013
Based on May 2015 Data from MD DDA
Trajectory towards Good Life
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 Drive
their Own Supports and Impact Policy and Systems Change
aLife
Disability path
LABELEDWORLD
• Poverty • Special
programs • Depend upon
public funding • Isolation – even
segregation
Human Service Path
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Washington Community of Practice Adapted from National CoP Supports to Families, 2015
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
???? ??
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
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 6,976Names on Waiting
List
114 620 850 11 1,695On list, No known
public benefits
510 1959 2864 48 5281On list, Getting Some
Public benefits
Trajectory Towards Employment
PovertyNo opportunities
Sheltered EmploymentDependence on Govt
EducationCareer
Job of ChoiceEconomic Sufficiency
$ for Home & Fun
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.