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Supercharging Transition with the LifeCourse Framework�

[5.12.22]

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Tami Allen

LifeCourse Ambassador and member of the Kansas Community of Practice

Families Together Inc.- Co-Executive Director

Family to Family Health Center – Project Director

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Craig Knutson

LifeCourse Ambassador and co-facilitator of the Kansas Community of Practice

Kansas Council on Developmental Disabilities Policy Analyst

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Learning Objectives for Today

Describe and discuss a basic overview of the LifeCourse Framework
Describe how transition professionals and parents can use LifeCourse Tools to plan for effective IEPs and transition plans
Describe how transition professionals can use the LifeCourse Framework to discover employment opportunities as students transition to adulthood
Describe how the LifeCourse Framework can guide conversations surrounding alternatives to guardianship

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How familiar are you with the Life Course Framework

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Setting the Stage

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National Community of Practice for�Supporting Families

Project Goal

To build capacity through a community of practice across and within States to create policies, practices and systems to better assist and support families that 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.

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Why the LifeCourse Framework?

Transition professionals are burdened with regulatory requirements

You have a tough job

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Students transition into an unimaginably complex adult service system

15 different service systems result in more possible combinations

for services than a person can meaningfully comprehend.

40,564,819,207,303,340,847,894,502,572,032

Functionally speaking, the service system is infinitely complex.

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Students and Families are being left behind:

Results from the Employment Systems Change Coalition housed at the Disability Rights Center of Kansas:

Only 53.8% of respondents (nearly 1700 Kansans) said the IEP contains a written transition plan.

− Students were dramatically less likely to state their IEP contains a written transition plan –only 5% said they believed it did!

− 67.6% of parents/guardians/educational advocates stated their student’s IEP contain a written transition plan.

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We have a choice:

We can either continue to try to make these service systems interact

and support people in a *really* inefficient manner, or we can adopt

a “universal language” that allows self advocates and families

communicate with a complex service system and allow that same

service system to more effectively communicate internally.

We need to cut through the “red tape.”

Moreover, we need to look beyond our traditional notions of supports

and services and take a more holistic approach to supporting people.

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We need to focus on what is really important

“The main thing is the main thing”

Bert Moore, Director, KSDE Special Education, and Title Services Team

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Why the LifeCourse Framework?

The LifeCourse Framework is a simple *way* to empower people and families to *plan* for a good life.

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The LifeCourse Framework starts with a very simple question:

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Vision & Trajectory for a Good Life

Trajectory towards Life Outcomes

Friends, family,

enough money,

job I like, home, faith, vacations, health, choice, freedom

Trajectory towards things unwanted

Vision of What I Don’t Want

What kinds of things do you want for YOUR good life? PWD and families usually want those same types of things. Everybody “gets” what the good life is. We just don’t usually ask them! What kinds of things do you think PWD and families will say they DON’T want? Sometimes you need to start there – they may not know what they want (because they are thinking in disability world) but they almost always can tell you want they don’t. FAMILY should have a good life trajectory too.

TRAJECTORY is the path that will either lead you toward the good life or toward things you don’t want. Think about throwing a football – the path that the ball takes on it’s way to the receiver is the trajectory. If you shoot an arrow, or a nerf gun – the path that the arrow follows is the trajectory. YOU CAN START at ANY AGE!!!!

Support coordinators, providers, Direct Support Professionals, Vocational Rehabilitation counselors, teachers….. ALL have the power to impact someone’s trajectory, sometimes it’s a positive impact, but also sometimes negatively, y their actions or words. We must be very careful and mindful of the impact we can have. Are we nudging the person and family toward what they want or what they don’t want?? EACH interaction, think about which way it nudged their trajectory!

Insert a story here if you have one

For example - KINDERGARTEN story – segregated class and “safer” special bus – but what trajectory is that putting the kindergartner on?

Trajectory isn’t always straight

We all have bumps in the road (lose a job, get a divorce, illness, etc. – you can get back on track

VISION and TRAJECTORY can be very broad or very specific and time limited. Might be what are we doing/what’s happening this week, or around a specific topic or life issue (lose weight, buy a house, etc)

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Sean example final trajectory

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Sean example trajectory – my vision

Make money
Have supportive co-workers
Work outside or somewhere I can sing

Be able to move around
Take frequent breaks
Do different tasks
Make choices and help set my job duty schedule
Listen to music while I sing

Live in my community with friends on a lake, own a boat and horse and have great wi-fi

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Sean example trajectory - dislikes

Not having a job I enjoy
Working in a sheltered workshop
Co-workers having low expectations
Working in isolation
Anxiety keeping me from working or enjoying new activities

Living only with people who have disabilities
Not having friends or being a part of my community

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Sean example trajectory – has helped

Sean

Inclusive education preschool-21
Family vacations
Being a part of community
Day PAS services – not attending a day service
Personal Care Attendant close in age with similar interests
Volunteering
Making choices
Supported decision making
New medical team

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Sean example trajectory – gotten in the way

VR vendors who didn’t see strengths and put in isolated settings
Relying on paid services and parents to provide community support
Lack of appropriate mental healthcare
One-to-one para-educator
Seizures, OCD and anxiety
Dependent on parents & PCA for daily hygiene
Self-injurious behaviors

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Once we develop our vision of a Good Life….

How do we get there?

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Charting the LifeCourse Integrated Supports STAR

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Integrating Supports for Employment Outcomes

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What are some ways we can use Technology (pink part of the Integrated Supports Star) to help a student Transition to Adulthood?

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The LifeCourse Framework can change our conversations about Guardianship

Although Kansas law states that Guardianship should be the last option and all other least restrictive options should be explored, KS has significantly more individuals with disabilities under guardianship than the national average.

66% of students with disabilities in Kansas wind up in guardianship.

The LifeCourse Framework can help transition specialists talk to families about alternatives to guardianship such as Supported Decision Making.

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What is Supported-Decision making?

Supported Decision-Making is an alternative to guardianship. Instead of having a guardian make a decision for the person with the disability, Supported Decision-Making allows the person with the disability to make his or her own decisions.

“Supported decision-making promotes self-determination, control, and autonomy. It fosters independence.”

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Exploring the Life Domains

https://www.lifecoursetools.com/lifecourse-library/exploring-the-life-domains/supported-decision-making/

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What’s important to me�I can make my own choices and decisions�People accepting me for who I am�People listening to me when I talk�Being with my family and friends�Being an Uncle and Great-Uncle!!��

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What’s important to me�Living on my own by myself�Having my personal privacy�Having money to spend�Having a meaningful job�Being able to VOTE��

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How to best support me:�Be patient with me�Don’t assume I don’t know anything�Ask me if I need help first before helping me�Let me make my own decisions even if you don’t agree ��