Community Living and the New HCBS Rule Esmé Grant Director of Public Policy 1

 NACDD represents the 56 DD Councils in every state and territory  The Public Policy office: Educates, informs, and activates DD Councils on priority federal issues Focuses on relations to all the federal agencies, the Hill, and federal governor offices Works with national representation of the DD network as well as over 100 disability organizations Manages the NACDD Public Policy Committee and all letters of support and regulatory comments Forges relationship with non-disability national organizations and businesses to improve awareness and crossover 2 Quick Facts

Outline of Discussion September 19, 2014 The ADA and Olmstead Overview of Medicaid and Social Security Introducing the new HCBS Rule Community Input – Where do you start? 3 Presentation Overview

f 4 The ADA  Passed July 26, 1990  Bipartisan and wide support in both Chambers  Established disability rights as a civil right  Based on four key goals: equal opportunity, full participation, independent living and economic self-sufficiency  Amended in 2008 to extend coverage further

5 The Olmstead Decision  Based on court case brought by Lois Curtis and Elaine Wilson Both women had DD and lived in a hospital in Georgia Mental Health professionals found they were ready to move to community but they remained confined in the institution  US Supreme Court made its decision June 22, 1999 Holding: Unjustified segregation of persons with disabilities constitutes discrimination in violation of Title II of the Americans with Disabilities Act. The Court held that public entities must provide community-based services to persons with disabilities when (1) such services are appropriate; (2) the affected persons do not oppose community-based treatment; and (3) community-based services can be reasonably accommodated, taking into account the resources available to the public entity and the needs of others who are receiving disability services from the entity.

2009 Proclamation “Year of Community Living”  Department of Housing and Urban Development issued an Olmstead compliance document and restructured Section 811 program to provide grants only to those with integrated housing  Department of Justice pursued several Olmstead settlements and broke new ground with recent Rhode Island settlement on sheltered workshops  The Centers for Medicaid and Medicare Services issued their new Home and Community-Based Services (HCBS) Rule 6 Olmstead in 2009 and beyond

Community Integration Act  S. 2515, led by Senator Harkin (D-IA) Introduced at 15 th Anniversary of Olmstead decision  Similar to previous efforts like Community Choice Act  Key mentions about the bill: Seeks to eliminate the institutional bias in Medicaid Bill would prohibit states from making anyone ineligible for HCBS based on type of disability Seeks to require states to find individuals eligible for HCBS Sets clear requirements for states regarding HCBS services Requires annual reporting of states about #s in institutions and in HCBS Note: Bill would not rebalance fund aka “institutional bias” but in practice would naturally shift funding to HCBS 7 Olmstead in 2009 and beyond

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Overview of Medicaid and Social Security  Social Security Generally – A system that creates a foundation of economic security for certain qualified recipients Created by the Social Security Act of 1935 SSDI was created in 1956 – used to only cover workers over 50 and adult children who acquired a disability before the age of 18 – paid for by a trust fund of payroll contributions SSI was created in 1972 (creates eligibility to Medicaid) – paid for by tax revenue  Medicaid Generally - A social health care program created under the Social Security system for families and individuals with low income and resources or for a particular category (people with disabilities who receive SSI, for example) Program was created with the Social Security Amendments Act of 1965 System matches federal funds to state funds to help supplement health and medical assistance to recipients Waivers began in the 1981 enacting Section 1915c of the Social Security Act Measure of HCBS LTSS: %, % 9 Overview of Medicaid and Social Security

History:  Published January 16, 2014  Impacts 1915c, 1915i, and 1915k (waivers under the Social Security Act) CMS has also indicated it will be used to assess 1115 waivers  Combines public comments from April 2011 and May 2012 (but process began in 2008 with ANPRM)  DD network laid out specific comments in December History of the HCBS Rule

Key Highlights of the CMS HCBS Rule  Defines, describes, and aligns home and community- based settings requirements across three Medicaid authorities  Setting selected based on person-centered process  Ensures individual’s dignity, respect, and freedom from coercion and restraint  Maximizes opportunities for individuals to have access to home and community-based services  Applies to residential AND non-residential settings Transition Timeline to Comply with New Rule  All waivers will have to submit transition plan no later than March 2015 in line with new rule (120 day rule) 11 Key Highlights of the HCBS Rule

Current Standing of Missouri  Five 1915c waivers that cover people with I/DD Comprehensive Waiver (includes residential) Missouri Children with Developmental Disabilities Waiver Support Waiver Autism Waiver Partnership for Hope Waiver  None that expire before March 2015? 12 Missouri Status Check

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5 Steps for Transition Plan Assessing Current Services & Settings  Step 1: Settings that are not HCBS  Step 2: Settings presumed not to be HCBS  Step 3: Determine if state’s services meet person- centered planning requirements  Step 4: Determine if state’s settings/services meet new regulatory requirements for HCBS  Step 5: Determine if the state’s provider owned/controlled settings meet the new regulatory requirements for HCBS 15 Step by Step: HCBS Rule Transition Plan

STEP 1: Determine if the state has appropriately identified settings that are NOT a home and community-based as determined by the HCBS rule  Is the setting A nursing facility An institution for mental disease An intermediate care facility for individuals with I/DD A hospital Finding: The rule prohibits 1915(c), 1915(i), and 1915(k) funding from going to any of the above settings. 16 Step by Step: HCBS Rule Transition Plan

STEP 2: Determine if the state has appropriately identified settings that are PRESUMED to have the qualities of an institution and are not home and community-based  Does the setting: Have the effect of isolating individuals with disabilities Put individuals receiving Medicaid in further isolation than those who do not receive it Qualify as a farmstead, gated community, or disability-specific residential school? Operate in abuilding that also provides inpatient institutional treament? Finding: A presumption of an institutional setting has to overcome heightened scruitiny by the Secretary of HHS in order to receive 1915c, 1915i, or 1915k funding 17 Step by Step: HCBS Rule Transition Plan

STEP 3: Determine if the state’s services are administered in accordance with the new HCBS rule requirements for the person-centered planning process (also called plan of care)  Considerations include: Process is in language easily understood by individual Provides necessary information and support to ensure individual can make their own choices Includes people chosen by the individual to be there Offers a method for the individual to request updates to the plan as needed Records the alternative HCBS settings considered by the individual Finding: If weaknesses in the process, state should propose improvements in the transition plan 18 Step by Step: HCBS Rule Transition Plan

STEP 4: Determine if the state’s settings and services meets the new regulatory requirements for HCBS  Considerations include: Does the individual come and go at anytime? Can the individual eat whenever they choose? Does the individual decorate their own room? Does the individual have choice of roommate and options regarding where to live and receive services? Does the individual participate in meaningful non-work activities in an integrated setting? Finding: If NO to any of the above questions, the state’s transition plan needs to propose improvements or changes and timelines. 19 Step by Step: HCBS Rule Transition Plan

STEP 5: Determine if the state’s provider owned or controlled settings meet the new regulatory requirements for HCBS  Considerations include: Does the individual have a lease or a written tenancy agreement? Does the individual have a private cell phone, computer, or other personal communication device? Is privacy afforded to the individual (no camera in dressing areas, staff knocks before entering, lock on bedroom doors) Do individuals have visitors of their choice and come and go as they wish? Finding: If NO to any of the above questions, the state’s transition plan needs to propose improvements or changes and timelines. 20 Step by Step: HCBS Rule Transition Plan

Community Input Where do you start? Educate yourself, state officials and the disability community about the new rule See official resources from CMS (medicaid.gov/hcbs) or on hcbsadvocacy.org Host town hall meetings, webinars, and other trainings. Seek state agency representation at these trainings Contact state advocacy organizations and establish a working group Prepare materials in accessible formats for distribution Identify areas where further clarification or guidance would be helpful and seek this from state agencies Watch for future guidance from CMS – stay tuned with NACDD and hcbsadvocacy.org! 21

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Community Input Where do you start? Educate providers and the disability community on the new requirements for individual choice and person- centered service plans Contact provider agencies and offer training Provide information from hcbsadvocacy.org that explain the rule (HCBS Worksheet) and person-centered planning 23

Community Input Where do you start? Identify any new applications or requests for renewed or amended 1915(c),(i), or (k) waivers expected by March 17, 2015 Ask your Medicaid waiver administrator when they plan to file their transition plan or when they plan to file a renewal or amendment You can also track this information at hcbsadvocacy.org 24

Community Input Where do you start? Advise the state with assessing the existing HCBS system  Request DD Council or individual representation on advisory board or planning team to coordinate assessment of HCBS system  Request transparency during the state assessment and plan development process Includes actively notifying DD Council and disability community of public meetings and comment periods 25

Community Input Where do you start? Assess, comment, comment, comment! States are required to provide CMS with a summary of all comments received Do not wait for the 30 day comment period on the plan, mobilize now to assess the current system When a transition plan is presented, add additional comments about the plan’s compliance with the new rule (use the HCBS worksheet at hcbsadvocacy.org to assist you) Stay tuned for future opportunities to comment. A state’s transition plan may not meet CMS’ expectations and this will mean there will be further opportunity to comment on an amended plan Send letters and copies of your comments to your Congressional delegation, state legislature, governor and all other relevant policymakers to inform them of your assessment of the transition plan 26

Starting today…  What would you keep about the current 1915c system? What works? What are some success stories?  What would you rid of with the current 1915c system? What are the barriers to community living? What is missing?  Thinking back on the new HCBS rule, can you think of settings that do not fit the new definition of home and community-based settings? For example, are there settings that isolate that receive HCBS funding? 27 Nothing About Us Without Us

Mark your calendars! 28 HCBS 5 Part Webinar Series to be announced in partnership with: The Autistic Self Advocacy Network, NDRN, AUCD, NACDD and the Collaboration for the Promotion of Self- Determination First webinar: September 30 Mark your calendars!

National Association of Councils on Developmental Disabilities 1825 K. Street, N.W. Suite 600 Washington, DC Esmé Grant Director of Public Policy 29 Contact Info