Washington State Team May, 2015 Ed Holen, DDC Shannon Manion, DDA Debbie Roberts, DDA Community of Practice: Supporting Individuals with Intellectual/Developmental Disabilities and Families over the Life Course

Vision for People a Life 2

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 3

Trajectory toward life a LIFE Education job relationships HOME friends Health things hobbies transportation choice Things to do savings Birth School Adulthood 4

a Life Birth School SSI Trajectory toward life Disability path LABELED WORLD Human Service Path Adulthood Guardianship Medical spend down 5

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 ) 6

A Life Birth School Disability path LABELED WORLD Human Service Path Adulthood 7

Person Family / Significant Persons Community Supports a person might obtain Services for a person 8

Family / Significant People Community Services meet needs Often wall the person off Often isolated from community Services Person 9

State Baseline: Demographics 10

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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 Members  Siblings Assuming Care Giving and Support Roles  Parents with developmental disabilities supporting children  Adults with developmental disabilities supported in self-determination, decision making, autonomy while still living in their family home 15

Fifth was later added as discussion have evolved  Improving the DDA front door experience 16

But First: Services/Support for No Paid Services (NPS) Caseload namely: 14,000 clients eligible but receive no DD paid services 2014 Legislative session passed two bills: HB 2746 SB 6387 Serves 5,000 people from NPS Caseload. Funding remained in 2015 legislative budget (so far). 17

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 18

Community of Practice: Supporting Individuals/Families over the Life Course Baseline Themes 19

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 20

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; 21

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%). 22

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 23

Parents with DD who are Parents Conversation on April 29 th Supported parenting services IFS Waiver 24

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 25

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 26

Information makes a difference 27

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 28

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 29

Receives Information About Available Services and Supports National Core IndicatorsChild/Family Survey 30

Do you receive information about the services and supports that help you plan? National Core Indicators: Adult Family Survey 31

Person-Centered Planning Tool Online 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 32

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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 39

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. 40

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. 41