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.