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Charting a Course to a

Good LifeAugust 18, 2017

Heather Sorrells and Carolyn Underwood

IPMG Assistant Directors of Case Management Operations

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Acknowledgementso In preparation for this presentation, IPMG would like to

thank and give credit to the following organizations. Due to their work in the area of Supporting Families Across a Lifespan, this slideshow has been developed. Reference and Resource information will be available at the end of this presentation. Thank you for your participation!

National Association of State Directors of

Developmental Disabilities

Services

Human Services

Research Institute

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Today’s AgendaoLearn about the current status and emerging

national trends in supporting families and individuals with ID/DD including the Community of Practice (CoP) Project.

oLooking at the trends in Indiana for waiver services by age groups and living arrangements.

oLearn about Indiana’s current needs within age groups.

oExplore the current conversation: “What does it really take to support families to have a good life?”

oObtain further resources from the national movement “Supporting Families throughout the Lifespan.”

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Why The Need For This National Discussion?

Building A National Agenda For Supporting Families With A Member With Intellectual And Developmental Disabilities

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Waiver Wait Lists

oOn September 1, 2012, DDRS began

implementation of wait list for Medicaid waiver

services.

oAs of the end of 2016, the wait list went from

15,000 to less than 1,400.

oWaiver Providers struggling to staff with the

increase in referrals.

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99%

1%

IPMG’s Data: FSW Waiver by Living

Arrangements

Living withFamily/Foster Home

Shared Housing

IPMG Trends: Family Setting - FSW

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28%

14%

19%

28%

10%

1%

IPMG’s Data: CIH Waiver by Living

Arrangements Living with Family/FosterHome

Living Alone or NonRHS SharingHousemate

Supported Living OneHousemate

Supported Living TwoHousemates

Supported Living ThreeHousemates

Other

IPMG Trends: Family Setting - CIH

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63%

37%

IPMG Data: Total DD Waivers

Family Home Outside of Family Setting

IPMG Trends: Family Setting

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3%

16%

45%

31%

5%

0-10 years

11-20 years

21-40 years

41-65 years

65 Over

IPMG Data: Individuals Served Age Ranges

all Waivers

Individuals Served Age Ranges

IPMG Trends: Age Range- All Waivers

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3%

29%

28%

23%

15%

2%

Under 3…

4-10 years

11-20 years

21-40 years

41-64 years

Over 65…

IPMG Data: 2016 All Waivers Referrals

by Age Range

IPMG Data: 2016 Referrals by Age Range

IPMG Trends: Referrals 2016 by Age

Range

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6%

15%

37%

42%

1 - 5 years (preschool)

6 - 10 years (elementary)

11-17 years (Middle/High)

18-22 years (Transitional)

IPMG Data: Individuals Served Age

Ranges all Waivers

2016: Referrals Under 22 Years

Future Trends

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Intake Survey

oQuestion: In regards to Intake referrals over the

past year, what age range has been the most

difficult range to obtain waiver services?

oAnswer: 20 years and below, with the range 1-

10 years identified as the most difficult range to

obtain waiver services.

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Intake Survey

oQuestion: Specifically for age range 10 and

under, what services are the most requested

and the most difficult to secure?

oAnswer: Any type of therapy

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Intake Survey

oQuestion: Specifically for age range 11-20, what

services are the most requested and the most

difficult to secure?

oAnswer:

oAny type of therapy services

oStaffing

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What Have We Learned?

oOver 63% of the Individuals served on Indiana’s

DD Waivers live in a family setting.

oThe age of referrals continue to decrease with

the expectations of increased referrals under 10

years of age.

oFamilies are unable to access desired services

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The CORE of a Good Life: Guided

Conversations with Parents on

Raising Young Children with

Disabilities

o“When we talked with parents and providers, they said that many of their conversations focused on finding professional services and resources. They were seeking therapies and interventions to fix the problems their children faced. Both parents and providers spoke of the pressure, stress and frustration this created.”

Molly Murphy, Ph.D.& Mark Sweet, Ph.D.

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Strategies for Supporting Families

oSupporting families requires a comprehensive

and coordinated infrastructure that includes

the following strategies:

oEducation and training

oConnections to other

oCollaborative

oNavigating and accessing services and supports

From the National Agenda on Supports to Families, 2011

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The Supporting Families Project

The Supporting

Families project is

operated under a five

year grant awarded to

NASDDDS by the

Administration on

Intellectual and

Developmental

Disabilities (AIDD)

beginning October 2012.

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How could supports be provided

in the family home across

lifespans?

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THREE BUCKETS

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INTEGRATED SUPPORTS

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Lifespan Supports

oDifferent supports are needed across each life

stage

oEach period of life comes with it’s own rewards

and challenges

oLink to more than just paid services

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Starting a New Family

Journey

Infancy 0-3

When a child is identified with a

disability families should:

Receive accurate information about

the diagnosis

Have an opportunity to meet with

other families

Obtain information and receive

training for their extended family

(sibling support groups, etc.)

Meet youth, and adults with

disabilities who can help them begin

to shape a positive vision for the

future

Get connected with advocacy and

family organizations to learn

advocacy skills that can help them

along the way

Building A National Agenda For Supporting Families With A Member With Intellectual And Developmental Disabilities

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Early Childhood

Ages 4-6

Beginning in early childhood, families

want:

Training and information to become

an empowered advocate who can

positively express hopes for their

child’s future

Access to integrated inclusive

experiences

Early education services and supports

Building A National Agenda For Supporting Families With A Member With Intellectual And Developmental Disabilities

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School Years (Elementary

and Middle)

Ages 6-13

During school years, families want:

Help and assistance as they navigate:

Individuals with Disabilities

Education Act (IDEA)

Medical providers

School districts

State disability systems

Advocacy and training in best

practices (inclusion, self-

determination, future planning etc.)

Community contacts inside and

outside of the disability world

Increased relationships and networks

that provide natural supports.

Building A National Agenda For Supporting Families With A Member With Intellectual And Developmental Disabilities

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Transition To Adulthood

(High School Transition)

Ages 14-21

“It is never too early to address

planning for the future, including

financial savings, post-secondary

education plans and employment

while children are still in school.

Building A National Agenda For Supporting Families With A Member With Intellectual And Developmental Disabilities

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Adult Life

Ages 22-62

“The adult family member moves

toward a self-determined life on his

or her own, that includes beginning

to search for work, find a place to call

home, choose friends, including

sexual partners, and maybe decide to

start his or her own family.

Building A National Agenda For Supporting Families With A Member With Intellectual And Developmental Disabilities

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Golden Years (Retirement)

Ages 62 and Older

“When life-span education and

supports to families are in place – and

when that education includes future

planning, including financial planning

and planning for the life and supports

the person needs – these fears can be

lessened and planful rather than

crisis driven transition can happen.”

Building A National Agenda For Supporting Families With A Member With Intellectual And Developmental Disabilities

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Supporting Families StrategiesoSupporting families requires a comprehensive and

coordinated infrastructure that includes the following strategies:o Funding for goods and services specific to the support

and/or caregiving role for the person with I/DD across the lifespan (e. g., respite, home modifications, cash assistance, assistive technology)

o Plan for crisis prevention/intervention for families and other caregivers

o Training to enhance the family’s ability to advocate for services and policies

o System for accountability and quality assurance through data collection, evaluation and feedback loop components

From the National Agenda on Supports to Families, 2011

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POLICY & SYSTEMS

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References and ResourcesoWebsite: National Community of Practice for

Supporting Families www.supportstofamilies.org

oFacebook: The Community of Practice for Supporting Families with Disabilities (http://facebook.com/supportstofamilies)

oTwitter: @familieswithidd(http://twitter.com/familieswithidd)

oEmail List: sign up @ http://supportstofamilies.org/

oLifeCourse Toolkit available @ http://www.lifecoursetools.com/planning/

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References and Resourceso Building a National Agenda For Supporting Families With A

Member With Intellectual And Developmental Disabilities http://www.waisman.wisc.edu/cedd/pdfs/products/family/Wingspread.pdf

o Innovations In Supporting Families Community Of Practice Framework For Systems Change Webinar Series, Overview Of The Lifecourse Framework http://supportstofamilies.org/wp-content/uploads/Jan-2015-Innovation-Kick-Off-Overview-Framework-2.pdf

o The CORE of a Good Life: Guided Conversations with Parents on Raising Young Children with Disabilities, Molly Murphy, Ph.D.& Mark Sweet, Ph.D., http://www.waisman.wisc.edu/cedd/pdfs/products/early/CORE_Guide.pdf

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IPMG Resources

oWebsite: https://gotoipmg.com

oiConnect with Friends:

https://ipmg.quickbase.com/db/bkepz5fpg?a=

dbpage&pageID=4

oResource database – talk to case manager

ohttps://gotoipmg.com/resources

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Questions