washington state team may, 2015 ed holen, ddc shannon manion, dda debbie roberts, dda community of...
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Washington State TeamMay, 2015
Ed Holen, DDCShannon Manion, DDADebbie Roberts, DDA
Community of Practice: Supporting Individuals with Intellectual/Developmental Disabilities and Families over the Life Course
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Vision for People
aLife
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The presence of a disability does not diminish a person’s rights nor opportunity to participate in life.
Disability is a Natural Part of Human Life
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Trajectory toward lifea
LIFE
Education
job
relationships
HOME
friends
Healththings
hobbiestransportation
choice
Things to do
savings
Birth
School
Adulthood
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a Life
Birth
SchoolSSI
Trajectory toward life
Disability path
LABELEDWORLD
Human Service Path
Adulthood
Guardianship
Medical spend
down
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Labeled
World
• Poverty • Special programs (living, jobs,
education, recreation• Depend upon public funding (bye,
bye, choice)• Isolation – even segregation • Needs (what you don’t have)
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A Life
Birth
School
Disability path
LABELEDWORLD
Human Service Path
Adulthood
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Person
Family / Significant Persons
CommunitySupports a
person might obtain
Services for a
person
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Family / Significant People
Community• Services meet
needs
• Often wall the person off
• Often isolated from
community
Services
Person
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State Baseline: Demographics
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People with Developmental Disabilities in Washington State
Enrolled40,071(49%) Not Enrolled
41,729(51%)
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Eligible for Developmental Disability Services
No Paid Ser-vices
14,265(36%)
Receiving Ser-vices
25,806(64%)
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No Paid Service = 14,265
Over 184,677(33%)
Under 189,588
(67%)
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Not Living with Par-
ents14,225(35%)
Adults Living with Parents
9,127(23%)
Children Liv-ing with Parents
16,719(42%)
Developmental Disability Administration Where People Live
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We gathered cross section of the DD movement to discuss what do we need to do better to Support Families. Nov 5, 2013 kick-off meeting held.
Four Areas of Focus emerged from the discussion:
Aging Care Givers Supporting Family MembersSiblings Assuming Care Giving and Support RolesParents with developmental disabilities supporting
childrenAdults with developmental disabilities supported in
self-determination, decision making, autonomy while still living in their family home
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Fifth was later added as discussion have evolved
Improving the DDA front door experience
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But First:
Services/Support for No Paid Services (NPS) Caseload namely:
14,000 clients eligible but receive no DD paid services2014 Legislative session passed two bills:
HB 2746SB 6387
Serves 5,000 people from NPS Caseload. Funding remained in 2015 legislative budget (so far).
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How?
• Change state funded IFS to a waiver (Medicaid Match)
• Creates a Community First Choice option
• Reinvests the new CFC revenue (in part) to serve 5,000
• Tried to embed flexibility into these programs
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Community of Practice:Supporting Individuals/Families over
the Life Course
Baseline Themes
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Aging Caregivers supporting adults living in family home
• Surveyed 1,300 clients 40 and older living at home with parents/family
• 381 responses to survey
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Survey Highlights
• 93% of respondents are the primary caregiver, 92% of these family caregivers are over age 60;
• Respondents report that their priorities are for their family member: to have support to live at home (70%), be safe and healthy (51%), and have a social life (51%).
• Although 70% of respondents receive services from DDA, 58% report that they are still in need of supports;
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• 70% have plans in place for their family member’s support when they are no longer able to do so, 63% would like additional help planning for the future.
• 67% would like to learn more about technology and how
• Priorities are for family member to have support to live at home (70%), be safe and healthy (51%), and have a social life (51%).
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Siblings Assuming Support/Caregiving Roles
Two focus group conversations (East/West)
Major Themes:
• Need for information & Planning• Better understand role and responsibility• More opportunities to network and share with each
other
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Parents with DD who are Parents
• Conversation on April 29th
• Supported parenting services IFS Waiver
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Improving the DDA front door experience
Partnering locally to change the experience individuals and families have as they “enter into” the formal service delivery system
Helping individuals and families begin to plan for the future
Working with two Washington Counties to pilot approaches
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Next step is to answer the question: So what do we do?
• To address these themes on a system wide basis
• In ways that are is sustainable
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Information makes a difference
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Informing Families Project
Outputs:
• 14,000 quarterly new letters developed and mailed to those on the No Paid Services Case Load
• Contracted with 4 local IFBT Coordinators (currently 3) to take information to local events/gatherings
• Maintained and used IFBT Website
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• We published at least one informational bulletin a month (two if there is a mental health edition) [Four in a month was the max].
• E newsletter distributed to 1,600 organizations or individuals to pass on to stakeholders
• We developed and published 6 bulletins and one video on mental/behavioral health issues
• During 2014 we began to more aggressively using Facebook
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Receives Information About Available Services and Supports
2005 2007 2009 20120
10
20
30
40
50
60
Always or UsuallySometimesSeldom or Never
National Core IndicatorsChild/Family Survey
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Do you receive information about the services and supports that help you plan?
2005 2007 2009 2011 20130
10
20
30
40
50
60
70
80
Always or UsuallySometimesSeldom or Never
National Core Indicators: Adult Family Survey
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Person-Centered Planning Tool Online
www.mylifeplan.guide
• Can use different settings
• Can use it at your own pace
• Individual/Family “own” it
Increase the pool of individuals skilled in Person Centered Planning
Provide a planning tool (such as my life tools) to individuals in advance of their Person Centered Services Planning meeting
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Route to Success: Supporting Families over the Life Course
Create knowledge base
– What we know?
Select social strategies –
-What will work?
Create stakeholder
will -Who cares?
Support Policy Entrepreneurs -Who will lead?
Use unexpected
events
Overall or area specific
What are problems, trends,
unmet needs?
Are there clear goals and methods for achieving them?
What are constraints? What
are specific strategies?
Who cares about the problem? Is there an existing constituency & political will?
Are there leaders to champion sustainable policy change?
Takes advantage of unpredictable or unexpected events?
Goal A Senior Families
Surveys sent to 1,300 families with sons and daughters 40 and older living at home with parents 381 responses Data collected
Increasing information about resources in partnership with IFBT Obtain funding for Smart Living Demonstration Project which will use technology to increase independence and rely less on human care giving
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Create knowledge base
– What we know?
Select social strategies –
-What will work?
Create stakeholder
will -Who cares?
Support Policy Entrepreneurs -Who will lead?
Use unexpected
events
Goal A Senior Families
Use the person centered planning tool at www.mylifeplan,guide Possible legislation to add DDA clients turning 40 living with parents/family to the state Case Load Forecasting Council
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Create knowledge base
– What we know?
Select social strategies –
-What will work?
Create stakeholder
will -Who cares?
Support Policy Entrepreneurs -Who will lead?
Use unexpected
events
Goal B Siblings in Support Roles
Info gathered from two engagement sessions
Increase information about resources and support roles Create a statewide sibling network Use person centered planning tool at www.mylifeplan.guide Create a fundamental of sibling caregiving support tool kit
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Create knowledge base
– What we know?
Select social strategies –
-What will work?
Create stakeholder
will -Who cares?
Support Policy Entrepreneurs -Who will lead?
Use unexpected
events
Goal C Parent with I/DD
One engagement session held on April 29, 2015 Information being compiled Better DDA data collection of how many clients of DDA have children
Educate parents and parents to be about the Supported Parent service included in proposed IFS Waiver Provide education and information to medical and other professions about people with I/DD being parents Explore the parent mentor Explore different ways to support people in the exercise of their rights
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Create knowledge base
– What we know?
Select social strategies –
-What will work?
Create stakeholder
will -Who cares?
Support Policy Entrepreneurs -Who will lead?
Use unexpected
events
Goal D Adults exercising autonomy and self-determination while living at home with parents/family
NCI survey results
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Create knowledge base
– What we know?
Select social strategies –
-What will work?
Create stakeholder
will -Who cares?
Support Policy Entrepreneurs -Who will lead?
Use unexpected
events
Goal E Improving DD System Front Door Experience
Have distributed over 25,000 information pocket folders available in English and Spanish
Pilot new front door to the DD system in two counties Can we create a virtual front door? What additional information will look like/be included? Distribute informational pocket folders
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Overview of Core Team/State Team
• Community of Practice Activities:- Our four member core team from DDA and DDC generally
meet monthly for planning activities and preparing the agenda for the statewide planning team
- Our 15 member statewide planning team meets quarterly to plan and review activities currently in process.- The planning team includes:
- Self Advocates- Parents- Advocacy groups- Counties- Aging and Long Term Care representatives- State representatives- UCEDD representative
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Next Steps:
• July State Team develop strategies and identify partnerships
Some strategies include:
• Smart Living Demo Project using technology?
• Information will be shared with more families in a systemic way.
• The planning tool that has been developed will be used widely and integrated well with the state person centered service planning process.
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• A siblings network will be established.
• A plan will be developed to better support senior families.
• We will have identified a plan to better support parents with I/DD.
• A mid-grant statewide meeting to share what we have learned and implemented.