the future is now - Community of Practice for Supporting Families

THE FUTURE IS NOW
Making the Connection
Second Biannual Developmental Disability Statewide Event
June 17-18, 2014 • Holiday Inn Executive Center • Columbia, MO
 WELCOME
Welcome to ‘The Future Is Now – Making The Connection’ Conference. The Missouri Division
of Developmental Disabilities is proud to sponsor this event together with the Developmental
Disabilities Council and the University Center for Excellence in Developmental Disabilities at the
University of Missouri-Kansas City.
For several years, the Missouri Division of Developmental Disabilities has strived to provide current
innovative and best practice information and resources from experts around the country. We are
pleased that these experts have traveled to our state to share the information with you directly, as
we continue partnering to enhance the service delivery system offering supports and services that
foster self-determination. In addition, we are fortunate to hear from Missouri innovators. There are
many great things happening in our state and over the next two days, we will have an opportunity to
learn from Missouri model leaders.
Thank you for your daily work to enhance the lives of men, women and children with developmental
disabilities in Missouri.
Sincerely
Jeff Grosvenor, Interim Director
Division of Developmental Disabilities
 about
The purpose of this conference is to bring together stakeholders to learn from national leaders and
from one another about what is happening in the disability field in Missouri and around the nation. The event provides opportunities during the two days for participants to network with others, share
thoughts and experiences and to begin realizing possibilities for Missourians with developmental disabilities. To assist with facilitation of these conversations, the conference will include the following:
• A graphic-recorder that will capture information that helps communicate thoughts and provide a
visual roadmap of the event.
• Time built into the agenda for on-going discussion and reflections from attendees.
This event is sponsored by:
3
 dmh priorities
Improving the quality of life of individuals in Missouri through supports that focus on:
Self-Determination
People are the primary decision maker in their
own lives, pursue what is important to them
and have a meaningful role in the community.
Supporting Families
The individual is part of a family system that
also needs support to care for their loved one,
not just thinking about services for the person
with a disability.
Employment First
Individuals are employees in integrated,
community settings that lead to economic
self-sufficiency.
Accessible Housing
People live in homes that meet their needs and
allow them to be as independent as possible and
receive the services they need where they live.
Individualized Services
& Supports
Individualized services and supports are
designed around the needs of the individual and
chosen by the person receiving services.
4
 agenda
DAY 1: June 17, 2014
DAY 2: June 18, 2014
8:30am Registration
8:00am Late registration
9:30am Welcome
8:30am National Real
9:45am Quality of Life, Social
Life Perspective
Capital & Community Holly & Eileen Forlenza
Cathy Ficker-Terrell
10:30am Break
11:00amBreak
10:45am Missouri Innovators:
11:30am Missouri Innovators:
Highlights of Practices
Highlights of Practices Across the State
Across the State
11:45am Lunch
12:00pmLunch
12:45pm Putting together the Pieces 1:00pm
Provider of the Future:
Dave Hasbury
Transforming to 2:00pm Adjourn
Individualized Supports
Lynne Seagle
2:15pmBreak
2:45pm
Friendships, Relationships & Community
Angela Amado
4:00pm
Reflections & Sharing
Dave Hasbury
4:30pm
Wrap up Day 1
I n d i v i d u a l ly
none of us have the answers but
t og e t h e r
we can create the support needed
in Missouri for the future.
5
 national leaders
Quality of Life, Social Capital & Community
At the end of the Christmas Classic, It’s a Wonderful Life; George Bailey reads an inscription
in a book given to him by Clarence, his guardian angel: “Remember, no man is a failure who
has friends.” The World Bank has been using the term social capital for more than 50 years
to help people in underdeveloped countries to build a better life. In order to develop social
capital, people need time and space to connect with others, time to build trust with friends,
a means to effectively communicate, and an opportunity for genuine participation, not mere
presence. This session will focus on three important concepts: 1. the importance of allowing
individuals to define their own quality of life measures; 2. the importance of building social
capital and connecting people to supports in their local community, especially when resources
are scarce; and 3. understanding the need for organizational change from a model of traditional
services to a model in which Medicaid dollars are repurposed to help people build community
connections, shift from trainees to employee, and shift from helpless to self-determined
community members.
9:45am | Tuesday
Cathy Ficker-Terrell | The Council on Quality & Leadership (CQL)
Cathy’s career has included working in government, non-profit organizations, university teaching,
advocacy and supporting and mentoring self advocates. Before joining CQL as President and
CEO, Cathy was President and CEO of The Institute on Public Policy for People with Disabilities,
an Illinois based organization dedicated to providing leadership and technical assistance to drive
public policy and promote best practices for individuals with disabilities.
Provider of the Future:
Transforming to Individualized Supports
This session will show yo one agency’s transformation from providing residential services in
congregate settings to providing supports to individuals within their own homes. Examples
will be given highlighting unique approaches of creating an environment where people with
disabilities lead lives of their own choosing as well as realistic solutions to housing. Lynne will
outline the importance of a strong connection between management approaches with staff
and person-centered supports for people with disabilities. Strategies for involving communities
in the mission of supporting people with disabilities through fundraising events and innovative
marketing techniques will be shared.
1:00pm | Tuesday
LynnE Seagle | Hope House Foundation
Lynne began her career at Hope House Foundation in 1978 as Director of Residential Services,
and has been the Executive Director for more than three decades. Under Lynne’s leadership, Hope
House has become internationally known for its innovative, person-centered approach. One of
her proudest accomplishments was guiding the agency through its transition from group homes
to supporting people in their own apartments in the early nineties. Her expertise encompasses
organizational change, building self-directed work groups, and participatory management.
6
Friendships, Relationships & Community
While many individuals with a disability label experience physical integration, there
are often huge gaps in real social inclusion -- true friendships and relationships with
community members, and authentic community belonging and membership.
This session will summarize seven successful strategies and basic lessons learned
in numerous projects over more than 20 years in connecting individuals with disabilities and
community members. Examples will be given addressing a wide variety of individuals of
varying abilities, in both urban and rural communities
2:45pm | Tuesday
Angela Amado, Ph.D. | ICI-UMN
Angela has conducted training throughout the U.S., Canada, and also in the Netherlands and Israel
on person-centered planning, friendships between people with and without developmental disabilities,
community building, self-determination, and person-centered agency and system design. Angela
has just created a new publication, Friends: Connecting People with Disabilities and Community
Members (2013). This new manual provides concrete, “how-to” strategies for supporting relationships
between people with disabilities and other community members.
Visit supportstofamilies.org/futureisnow/ to download materials,
view archived presentations, and connect with resources!
Just Because I Can’t Talk,
Doesn’t Mean I Don’t Have Anything to Say
This powerful keynote session will inspire you to look at life through the lens of hope and
possibilities. Presented by Holly and Eileen Forlenza, you will hear an amazing story of two
women dedicated to giving voice to the voiceless. Holly, age 25, has pushed beyond the limits
of intellectual disabilities to become an author, songwriter, small business owner, sharing her
non-verbal message of hope and possibilities. Eileen has been a motivational speaker/vocalist
for over 20 years and together with her daughter Holly has been a powerful advocate at the local,
state and national levels. Using supportive communication, Holly will share her wisdom and
insight about life as a non-verbal woman breaking her silence to advocate for full acceptance,
respect and systems change. You don’t want to miss this “standing room only” presentation!
8:30am | Wednesday
HOLLY & EILEEN FORLENZA
Holly Forlenza is a young woman who has worn the hats of daughter, artist,
and business owner. Holly wrote an anthem of love in a song she titled, “God
Will Sing You Home.” In addition, Holly published a book titled, “Just Because
I Can’t Talk Doesn’t Mean I Don’t Have Anything to Say.” Eileen Forlenza is
Holly’s mother. Eileen is a motivational speaker, leader, and performer who is
recognized nationally for her work on family engagement. In recognition of her
achievements, Eileen received a personal invitation from the White House by
President Obama in July 2010, and was also awarded the prestigious Woman
of the Year Award from the National Association of Professional Women.
7
 missouri innovators
11:30am | Tuesday
Partnership for Hope:
An individualized support waiver that promotes and
fosters self-determination and strengthens family
Dr. Gotto will discuss the key components of the PfH waiver,
how those components promote self-determination, and the
impact they are having statewide. The information he will
present comes out of the first two years of an impact evaluation
he is conducting for the Division of Developmental Disabilities.
Learn more about the
Partnership for Hope Waiver
at dmh.mo.gov/dd
George Gotto, PhD, Director of Community Services
UMKC-Institute for Human Development, UCEDD
Missouri DevelopMENTAL
DISABILITIES Council
Innovations for the Future
The Missouri Developmental Disabilities Council will highlight
several innovative projects which assure that individuals with
developmental disabilities and their families participate in the
design of and have access to needed community services,
individualized supports, and other forms of assistance that
promote self-determination, independence, productivity, and
integration in all aspects of community life.
Vicky Davidson, M.Ed., Executive Director
Missouri Developmental Disabilities Council
Discover the MO
Developmental Disabilities
Council at moddcouncil.org
ART INSPIRED ACADEMY
Making Connections
Art Inspired Academy is a program of Abilities First. Our goal
is to provide an inclusive experience for individuals with and
without disabilities to participate in creative arts programming
including theatre, music, dance and art.
Find out more about the
Art Inspired Academy at
artinspiredacademy.com
Jamie McGranahan, Project Manager
Art Inspired Academy | Abilities First
& Conor McGranahan, Artist
8
10:45am | Wednesday
Charting the life course:
Planning a vision for an enviable life
STRATEGIES TO SUPPORT REAL LIVES
Learn more about the life
course framework at
lifecoursetools.com
Life course tools were developed by families for families to help
individuals with disabilities and families at any age or stage of
life think about what they need to know, identify how to find
or develop supports, and discover what it takes to live the lives
they want to live. Organizations have been using the framework
to help individuals and families across the state plan a vision for
a good life. Find out how it is being used in a local community
here in Missouri.
Kim Buckman, Service Coordination Supervisor
County Connections | countyconnectionstcm.com
Cyndi Johns, Human Resources & Skill Development
Learning Opportunities Quality Works (LOQW) | loqw.com
Supporting families &
individualized supports
The St. Louis Arc was founded as a grassroots organization in
1950 by a group of families who were seeking a better life for
their children with developmental disabilities. Arc has grown
into a large multi-service organization that provides supports to
more than 3,000 people – but families continue to provide much
of the strength and focus of the agency. St Louis Arc’s newest
venture is building supports in existing communities that will
give people maximum opportunities to build relationships.
Sharon Spurlock, Director of Family Support
& Quality Enhancement
St. Louis Arc
Get to knowe about the
St. Louis Arc at slarc.org
The Tiered Supports Process:
Improving Implementation of Positive Supports
for Quality Lives
Find out more about the
MO DDD Tiered Supports
initiative at dhm.mo.gov/dd
Missouri DDD Tiered Supports initiative provides technical
assistance, training and coaching for agencies to design
data, systems, and implementation of evidenced based
positive support practices. Agencies participate in the process
voluntarily and work in collaboration with the regional behavior
resource teams.
Terri Rodgers, Ph.D, BCBA, Chief Behavior Analyst
DMH Division of Developmental Disabilities
9
Improving lives THROUGH supports and services
THAT FOSTER self-determination
FAST FACTS/FISCAL 2014
•
•
•
•
•
•
•
DDD was appropriated over $852 million in Fiscal Year 2014 to serve approximately 33,900 individuals.
Over 86% of DDD's budget is used to purchase services and supports for 33,253 or 98% of the
individuals served by DDD living in the community. Other resources are provided by County Senate
Bill 40 boards, fund-raising from community providers, and natural supports within the community.
In 2006, there were 17 counties providing local Targeted Case Management (TCM) services
supporting 4,301 individuals, representing 15% of persons served. Currently, there are 101 counties providing local TCM services supporting over 19,700 individuals, representing over 60% of persons served.
As of May 2014, Partnership for Hope Waiver has enrolled over 3,054 individuals in 100 counties
and the City of St. Louis. DDD and Senate Bill 40 Board partners continue to encourage the remaining
16 counties not enrolled in the Partnership to join the waiver.
In Fiscal Year 2009 there were 8,948 persons served in the DDD Medicaid waivers compared to
12,993 served in Fiscal Year 2014.
DDD habilitation center census has declined significantly from over 1,300 individuals in July 2000 to
our current on-campus census of 435 as of July 2014.
Self-directed supports has grown steadily over the past five years from 168 participants in Fiscal Year 2008 to 1093 participants in Fiscal Year 2014.
Beyond the numbers, DDD is
working every day to make
a difference in the lives of
individuals with developmental
disabilities and their families.
To see the impact DDD is making,
visit dmh.mo.gov/dd/spotlight
The vision driving our mission is
Missourians with developmental
disabilities having rights,
responsibilities, and opportunities
to achieve personal outcomes and
pursue their dreams.
MISSOURI DEPARTMENT OF MENTAL HEALTH
www.dmh.mo.gov/dd
UMKC Institute for Human Development promotes self-determination and
social capital for greater community involvement and a better quality of life.
Look for these products!
Success in Telling
Your Story
Advising Through
Self-Determination
A well-told story is the best
way to communicate our
ideas, connect with others,
advocate for our needs,
relieve stress, change lives,
and stimulate action.
This guide provides advisors
and self-advocates with
a variety of resources,
from general information
regarding disability and
advocacy to specific
examples of activities that
promote self-determination.
Social Capital Web
The Social Capital Web is a
simple and fun activity that
will create a picture of the
social capital you already
have and help you build
more! This product will be
available in both a printed
version and as an “app.”
and watch for our new
“iPad and iPhone Application for Prevention of Sexual Abuse of People with Developmental
Disabilities by Promoting Self-Determination” available later this year!
jointly funded by the Missouri Division of Developmental Disabilities,
the UMKC Institute for Human Development, and the Missouri Developmental Disabilities Council.
This iPad/iPhone app will:
 be an important “app” for people with disabilities.
 help you create YOUR plan for a safe life.
 teach about self-determination and decision-making.
 teach about sexual abuse, how to prevent it, and how to respond if it does happen to you.
www.ihd.umkc.edu
816.235.1770
215 W. Pershing, Kansas City, MO 64108
Assisting individuals, families, and the
community to include all people with
developmental disabilities in every aspect of life.
Learn more about the Council and our projects at moddcouncil.org
Swing Together
Victimization Task Force
This project began as a small SEEDS grant to place
an accessible swing at primary and elementary
school playgrounds in Kirksville so that all children can
participate in the school community. Children who had
to sit on the sidelines and watch other children play are
now included. As a direct result of the Swings project
a new group, Northeast Missouri Inclusion Project,
formed to create a totally accessible playground in
Kirksville. This project estimated at $450,000 has
brought the community together, increased awareness
and created broad- based community partnerships
which will result in all children being included.
The Council has convened a task force to establish a
statewide interagency, multidisciplinary, collaborative
approach to prevent and address abuse/crime
committed against persons with disabilities. The
Task Force will focus on addressing all aspects of the
victimization of adults with disabilities; prevention,
identification, reporting, investigation, prosecution,
services and supports.
Missouri’s Working Interdisciplinary Network
of Guardianship Stakeholders (MO-WINGS)
The Council convened a taskforce to review and
recommend statutory changes to update Missouri’s
guardianship law. Since Missouri’s current guardianship
law went into effect in 1983, Mo has enacted durable
powers of attorney laws for health care and financial/
property purposes, a custodianship law, and the
uniform trust code. Our guardianship law needs to
be coordinated better with those other alternatives
and be more sensitive to the needs of people with
disabilities. MO-WINGS has completed a working draft
of proposed changes and will introduce legislation that
will modernize and enhance our guardianship statutes
in Missouri. In addition a comprehensive guardianship
resource guide has been developed as well as trainings
around the state to increase the understanding of
options and alternatives to guardianship.
MO DB 101
MO DB 101 is a free, online, Missouri-specific disability
benefits calculator that lets individuals see how income
from a job interacts with their benefits. DB 101 does
not replace meeting with a Benefits Planner, but it does
improve an individual’s knowledge of how income and
benefits interact. Log on at mo.db101.org
The Guide to Career Discovery
This guide designed to support job seekers to plan
for, and achieve, integrated community employment.
It is a framework that allows a job seeker to develop
an individualized plan to achieve a career that makes
sense to them.
Building Assets and Promoting Choice
Building Assets and Promoting Choice is a project
around Asset Development and Financial Education
designed to assist individuals to become more selfsufficient and less dependent on public benefits,
while building a better economic future. Our goal is to
increase access to accurate information about asset
building and building a better economic future.
(800) 500-7878 | moddcouncil.org
Introducing LIFECOURSETOOLS.COM
What is lifecoursetools.com?
Lifecoursetools.com is a new,
one-stop resource for individuals with
developmental disabilities and their
families, the professionals who serve them,
and organizations that support them.
lifecoursetools.com ad
Log on today and gain access to tools for
learning about your options, exploring the
possibilities, planning a vision for a good
life, and connecting to resources!
You can help!
If you have a passion for helping families with
disabilities, we can use your help to make
our resource better for families! Volunteer
positions are flexible and on your own time.
Visit us at lifecoursetools.com for details.
Lifecoursetools.com is a collaboration between:
STRATEGIES TO SUPPORT REAL LIVES
STRATEGIES TO SUPPORT REAL LIVES
We believe that...
Life is a journey – Our lives are not static,
they change every day.
It’s all about vision – Anything is possible,
with the right vision.
Everything is connected – What you do
today affects your life in the future.
Our overall compass for people with
disabilities and their families is “quality of life.”
Connect with us
Call 800-444-0821 | Visit mofamilytofamily.org
Call us when you
• receive a diagnosis or medical information
you don’t understand
• have a burning question and aren’t sure
where to start looking for answers
• want to think through options for supports,
services, or funding that fit your family
• you feel like nobody understands what you
are going through
• when you feel overwhelmed or stressed out
and need to vent
We can help! We are only a phone call, email, or
click away!
 NOTES

Download Report