District of Columbia Team
1
Individuals in DC with I/DD
9,632 individuals estimated to have Developmental Disabilities*
23%
(2,228)
77%
(7,404)
Receiving DDS Services
Inside the State System
Living independently or with family
IDD Waiver
Not Receiving DDS
Services
*Based on 1.49% prevalence, S. Larson, University of Minnesota (2013)
ICF/IDD
796
1,655
330
Waiting List
0
2
Current Reality In State
•
•
•
•
•
•
•
•
•
•
•
•
New Mayoral Administration (January 2015)
New Developmental Disabilities Administration (DDA) Director (June 1, 2015)
New Committee on Health and Human Services
Increase in proposed FY16 budget for DDA, but spending pressure because of
delays in waiver amendment approval
Working to close out Evans class action litigation
No Wrong Door Planning grant and redesign of LTSS delivery
HCBS Settings Rule and Transition Plan
Commitment of adults with IDD to community based services
Gaps in services and supports – adults with DD or TBI; no coordinating agency
for kids
Employment First initiatives in progress
Strong PCT initiative
National Resource Center on Supported Decision-Making in DC and housed
within a Core Team partner agency
3
THEN and NOW: Our State CoP
Vision, Goals and Priorities
Year One Goals
Current Goals
Engage community at large, including
families we have not previously reached,
non-profit and government partners, etc.
Our overarching goals are the same, but
our strategies and approaches have
broadened and we have modified our
projected outputs based upon what we
have learned from the CoP and availability
of new opportunities.
Create a framework for flexible selfdirected person and family-centered
supports.
End commitment of people with I/DD and
return decision-making to the hands of
people with I/DD and their families
Plan to address service gaps, including
services to adults with DD; adults with
TBI; and coordination of services for kids.
For example:
• Working with NCCC through NWD
• Need for DC P2P
• Supported Decision-Making as part of
plan to end commitment
• No Wrong Door planning
• Advocacy Guide
4
THEN and NOW: Our State CoP
Stakeholders and Partners
Year One Partners
Current Partners
Core Team
Core Team
ADDED
•
•
•
•
Department on Disability Services
Developmental Disabilities Council
Georgetown University Center for Child and
Human Development
Quality Trust for Individuals with Disabilities
State Team
•
•
•
•
•
•
Parents Advocates Leaders
Project ACTION!
University Legal Services (DC’s P&A)
School Talk
Parent Leaders
Almost entirely people with I/DD and their
families
•
•
•
Project ACTION!
Health Service for Children with Special
Needs, Inc.
Advocates for Justice and Education
State Team
ADDED
•
•
•
•
•
•
Male Caregivers Support Group
DC government agencies – Education,
Aging/ ADRC (goal to add more)
Service providers of people with IDD
Georgetown University Law Center
National Resource Center on Supported
Decision-Making
DLA Piper
5
Overview of Core Team Activities
• How often do we meet?
• Core team meets monthly.
• State team meets quarterly.
• Subcommittees meet as needed.
• How many people attend?
• 60 people at our last state team meeting, the great majority of whom were
people with I/DD & family members
• How do we structure the agenda?
• Introductions
• Overview of the CoP – review of goals and progress
• Interactive group discussion on meeting topic(s)- facilitated to ensure that
we can hear from everyone, recognizing that each person comes to the
table with a different comfort level and advocacy skills and experience
• Report out and opportunity for feedback on subcommittee work
• Closing
6
Community Engagement
•
•
•
•
•
Bucket of Support: Information
How did we choose?
• Families are the experts on the supports they need. We needed a trusted feedback
loop so that our work could be guided and well-informed.
How did we get started?
• Reached out to trusted family leaders to begin building relationships.
• Started with people with I/DD and their families to create a safe space for
exploration.
• Stipend policy and procedure,
• PCT approach to reframe conversation around people’s strengths and shared
responsibilities for change.
Who is it focused on?
• People with I/DD and their families across lifespan and regardless of whether
receiving formal supports.
What are we doing?
• Outreach through Core Team partners and trusted family leaders.
• Advocacy Across the LifeCourse guide to build the voices of families.
7
Community Engagement
•
•
•
•
•
How are we sustaining it?
• Family Support Council created by legislation.
• Legislative authority for stipends.
• Train the Trainer: Families Planning Together (One Page Positive Profiles).
How are we collecting data?
• List-serv has grown from 50 – 200.
• Attendance has grown from 30 – 60.
How have we applied the LifeCourse framework?
• Engaged families, non-profits, and gov’t agencies across LifeCourse.
• Framed conversation around the Trajectory and Integrated Supports.
• Development of Advocacy Across the LifeCourse guide.
What are our success and outcomes so far?
• Growth in core team, state team, list-serv & info-dissemination partners.
• Increased participation at DDS, DDC, and Council of DC.
• Launch of Family Support Council – first meeting June 2015.
What are our biggest challenges?
• Need to increase cultural and linguistic competency.
• Better engagement with fathers and siblings.
8
Family-Centered Supports
•
•
•
•
•
Bucket of Support: Goods and Services & Peer
How did we choose?
• DC currently has only a comprehensive waiver for adults with I/DD.
• We do not yet offer self-direction.
• Many support groups, but no P2P chapter offering peer supports across the lifespan
and across disabilities.
How did we get started?
• Community mapping to understand what supports are already in place.
• Working/ Not Working conversation with families about existing supports.
Who is it focused on?
• People with I/DD and their families in need of formal and informal LTSS.
What are we doing?
• Working with Medicaid agency and subject matter expert to build a framework for
participant directed services.
• Research on innovative and best practices.
• Working with National P2P to launch a DC chapter of P2P.
9
Family-Centered Supports
•
•
•
•
•
How are we sustaining it?
• Development of a DC P2P chapter to offer ongoing peer-to-peer support.
• Development of a Medicaid infrastructure for participant directed services.
• Introduction of LifeCourse tools to ISP for integrated supports planning.
• Family trainers for Families Planning Together
• Revitalization of DDA Advisory Committee to guide IFS waiver planning.
How are we collecting data?
• Qualitative data collected at each state team meeting.
How have we applied the LifeCourse framework?
• Using the trajectory to talk with families about what a good life looks like and what
supports are needed.
• Families Planning Together train the trainer curriculum includes Trajectory.
What are our success and outcomes so far?
• Families have used PCT skills to improve services under current model, including
more positive and effective doctor’s appointments, IEP and ISP meetings and
training of direct support staff.
What are our biggest challenges?
• Encouraging staff and families to think about integrated supports is a culture shift.
• Drafting and funding an IFS waiver.
• Sustainable funding for DC P2P.
10
Ending Commitment
•
•
•
•
•
Bucket of Support: Info & Goods and Services
How did we choose?
• DC is the only jurisdiction that commits adults to community based services, taking
decision-making away from people and their families as part of the front-door to
residential supports.
• Recent history of legislative reform efforts indicated need to understand how
families envision ensuring health and safety and mitigating risk without legal
structure of commitment.
How did we get started?
• Talked with families about their experiences with commitment and guardianship
(working/ not working); barriers to family and self-determination; and about what
they would find useful as an alternative strategy to keep their loved ones safe.
Who is it focused on?
• People with I/DD in need of formal residential supports and their families.
What are we doing?
• Co-hosted state team meeting with National Center on Supported Decision-Making
(SDM).
• Establishing a subcommittee to examine legal infrastructure that supports or poses a
barrier to SDM.
11
Ending Commitment
•
•
•
•
•
How are we sustaining it?
• Advocacy Guide to strengthen voices of families.
• Will make recommendations to the Mayor for legislative reform by September 30,
2015.
How are we collecting data?
• Qualitative data collected at each state team meeting.
How have we applied the LifeCourse framework?
• Using the trajectory to talk with families about what a good life looks like and what
supports are needed.
What are our success and outcomes so far?
• CHHS has asked for a comprehensive analysis of the impact ending commitment in
the District. (December 1, 2015)
What are our biggest challenges?
• Community opposition.
12
Expansion of Service System
•
•
•
•
•
Bucket of Support: Goods and Services
How did we choose?
• DC is one of two jurisdictions that supports only adults with I/DD.
• Significant service gaps for adults with DD; and lack of coordination of supports for
youth.
• Recent history of legislative reform efforts indicated need to work with the
community to understand how to fairly provide supports within available funding
(establishment of a waiting list).
How did we get started?
• Community mapping with families helped identify gaps and areas for increased
coordination.
Who is it focused on?
• People with intellectual or developmental disabilities and their families throughout
lifespan.
What are we doing?
• Advocacy Guide
13
Expansion of Service System
•
•
•
•
•
How are we sustaining it?
• NWD planning includes gap analysis and re-envisioning the structure for delivery of
LTSS.
• Advocacy Guide to strength voices of families.
How are we collecting data?
• Qualitative data collected at each state team meeting.
• Assessment through NWD.
How have we applied the LifeCourse framework?
• Conducted community mapping across the LifeCourse.
What are our success and outcomes so far?
• CHHS has asked for a comprehensive analysis of the impact of extending eligibility
for DDS services to all individuals in the District meeting the broader definition of
developmental disabilities. (December 1, 2015)
What are our biggest challenges?
• Funding.
14
Biggest Lessons Learned So Far
• The participants of the DC CoP have an enormous amount of collective
knowledge and an important role for the CoP is to provide space for that
knowledge to be shared.
• Families need support to participate to their fullest potential (stipends,
transportation, meals and timing).
• Building mutual trust and support with family members who are leaders and
trusted in the community is key.
• Core team members must be willing to invest time, resources, and leadership to
create and sustain the CoP.
• Work of the CoP must be braided into other systems-change initiatives so that we
can bring this to scale.
• Using PCT skills helps families to re-frame a conversation that is driven by a
service system focused on compliance.
• Families are struggling with how to support people with I/DD to build
relationships with friends and community members.
15
Vision for Next Year
•
If next year goes exactly as planned, what will your state team achieve?
• Community Engagement
• Continued growth in partnerships at State Team level.
• Increased participation in subcommittees.
• Increase in diversity of state team members.
• Training of families in Families Planning Together
• Family Centered Supports
• Start up of DC P2P.
• Work with families to draft innovative IFS waiver with self-direction, with a
planned launch for FY 2017.
• Ending Commitment
• Introduction of legislation to end commitment.
• Advocacy by people with I/DD and their families.
• Begin to implement recommendations re: Supported Decision-Making
• Expansion of Service System
• Receive NWD implementation funds and begin to redesign front door to all LTSS
so that they are person and family centered and support people throughout the
lifespan.
16