FULFILLING THE PROMISE FOR TENNESSEANS WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES What you need to know to navigate the system and ensure your voice is heard
Learning Objectives
How the CMS Final Rule impacts the delivery of long term services and supports Amendment 27 and the proposed Employment and Community First CHOICES Waiver How Families and Individuals with Disabilities can Effectively Advocate for Change
What is the CMS final rule?
On March 17, 2014 a new federal Rule concerning Home and Community Based Services took effect. There are two important aspects to this Rule: The Person-Centered Planning Process, which increases the person’s input in how services are planned and what is included in the plan of care; Home and Community Based Services Settings, which increases protections relating to where people receive Home and Community Based Services
Why does this new rule matter to you?
These rules will be applied to everyone receiving HCBS funded by Medicaid, including people receiving HCBS in: o1915(c) waivers—in TN, the three DIDD HCBS waivers for people with intellectual disabilities (Statewide, CAC and Self-Determination) o1115 waivers—in TN, includes the CHOICES program for seniors and adults with physical disabilities and will include the new Employment and Community First CHOICES waivers All states must review their HCBS programs and services o HCBS providers have to look at where and how they provide services to you. o You will be asked to share your experience in planning and receiving HCBS
What does the final rule have to do with LTSS? 
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The new federal rule redefines where and how long term supports and services (LTSS) will be provided to individuals receiving HCBS waiver services Depending upon how the LTSS are defined, segregated settings such as sheltered workshops, day services facilities, congregate residential settings may no longer be funded
The bottom line
States have up to five years to implement the new rules LTSS will be provided in integrated community settings You will see increases in community employment, volunteerism, community social activities, and integrated housing options You will see decreases in services that have traditionally been defined by “bricks and mortar”
Want to learn more about the CMS final rule? 
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https://www.tn.gov/tenncare/topic/transition-plandocuments-for-new-federal-home-and-communitybased-services http://www.medicaid.gov/medicaid-chip-programinformation/by-topics/long-term-services-andsupports/home-and-community-basedservices/downloads/final-rule-slides01292014.pdf
What is the Employment and Community First CHOICES (ECF) Waiver?
The ECF CHOICES waiver is the culmination of the work of the “Fulfilling the Promise” Taskforce created in 2007 It is the result of input from stake holders across Tennessee that was first seen in the 2014 “Concept Paper” It was submitted to the Centers for Medicare and Medicaid Services (CMS) as “Amendment 27” It will make HCBS waiver services (also called LTSS) available to people with developmental disabilities other than intellectual disabilities – a population in TN that has largely been ignored
How is ECF CHOICES different?
ECF CHOICES is an 1115 waiver – not a 1915c waiver like the current DIDD waivers ECF CHOICES will be administered through the Managed Care Organizations (MCOs) rather than the Department of Intellectual and Developmental Disabilities (DIDD) ECF CHOICES will use NF level of care (LOC) rather than ICF-ID LOC ECF CHOICES will use MCO Support Coordinators instead of Independent Support Coordinators (ISCs)
What service packages are available?
There will be three service packages available*: Essential
Family Supports Essential Supports for Employment and Independent Living Comprehensive Supports for Employment and Independent Living *See handout
Positive aspects of the proposed ECF CHOICES Waivers
Children will be eligible for services Targeting young adults with IDD transitioning out of school and adult with IDD living at home with aging caregivers All waivers include self-direction as an option Service packages have a “whole family” focus Services reflect stakeholder input Services focus on employment and community living Available to people with DD other than ID
Concerns about the proposed ECF CHOICES Waiver
Use of nursing home level of care (LOC) A few key services missing in high level service packages A gap in age requirements between the first two service packages Interplay between some of the services a bit confusing Not clear if people who cannot work (or are at retirement) will have adequate service options
Want to learn more about ECF CHOICES? 
https://www.tn.gov/tenncare/section/long-termservices-supports
Advocating for change – basics for individuals and families
Of Note in the TN General Assembly Republican
majority in House and Senate House members limited to carrying fifteen(15)bills Senate members have no limit
House Committee Structure
AG & Natural Resources Business & Utilities Civil Justice Consumer & Human Resources Criminal Justice Ethics Education
Finance Government Operations Health Insurance and Banking Local Government State Government Transportation Calendar and Rules
Senate Committee Structure
Commerce & Labor Energy, Agriculture & Natural Resources Health & Welfare Education Finance, Ways and Means Government Operations Judiciary State & Local Government Transportation
Your role in legislative advocacy
Develop a relationship with your legislators by… Making
appointments to meet with them in person and share issues of importance to you Make phone calls to share your concerns Send letters or emails to share your concern
When they vote in a way that supports your concerns, be sure to thank them When they vote in a way that does not support your concerns, voice your disappointment
Working with Legislators
Remember that elected officials work for you and they want to hear what is important to you Remember that they are people…just like you It is important to develop relationships with your elected officials – this requires more than a “one time” contact Remember that elected officials are not experts in every aspect of government or programs – for many, there is a learning curve with regard to the needs of people with intellectual and developmental disabilities
The power of many voices – grassroots advocacy in public policy
Grassroots advocacy is often defined as the general promotion of an idea, proposal, or cause through education, outreach, and organization of everyday citizens Advocacy is a means by which we can move our concerns to create positive change Advocacy may include lobbying
Other ways to advocate for change
Working with local governments Working with government departments Submitting comments during public comment periods on proposed rules, regulations, etc. Attending public hearings Creating collaborative coalitions
Policy planning Step 1: Determine what is right and what is wrong Step 2: Analyze the problem (What needs to be fixed? How? When? By whom?) Step 3: Identify collaborative partners Step 4: Determine what policy level to address (Department level policy, legislation, etc.) Step 5: Create your agenda Step 6: Develop your proposal Step 7: Work with policy makers, partners, the community and advocates to bring about change
Developing coalitions Reasons for developing collaborations in policy work: Enhancing personal/organizational visibility--policy makers can’t help you fix your problem if they don’t know you exist Obtaining inclusion in decision-making bodies-if policy makers know you’re a resource, they’ll turn to you when they need answers Developing links with social movements--“many hands make light work”
Questions? Carrie Hobbs Guiden The Arc Tennessee 151 Athens Way, Suite 100 Nashville, TN 37228 615-248-5878 X14 cguiden@thearctn.org www.thearctn.org