Advancing Self-Direction for People with Head Injuries

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Vermont Department of Disabilities, Aging and Independent Living Advancing Self-Direction for People with Head Injuries NASHIA SOS Conference Des Moines, IA September 27, 2018 Sara Lane Vermont Department of Disabilities, Aging, and Independent Living Merle Edwards-Orr Applied Self-Direction

An Overview of Self- Direction Merle Edwards-Orr Applied Self-Direction

What is Self-Direction?

Self-Direction in Long-Term Services and Supports (LTSS) Home Assisted Living Institutional Settings LTSS Home & Community-Based (HCBS) Settings Hospitals Nursing Homes Residential Settings Adult Foster Homes Group Homes Self-Direction 4

What is Self-Direction? Participant controls What How When Who 5

Traditional Services Self-Directed Services Participant Workers recruited and report to agency Program and agency set tasks Agency specifies salary and benefits Normal work hour schedule Worker training required by agency Case managers determine needs & services Participant Recruits and manages workers Sets tasks Specifies salary and benefits (optional) Assigns flexible work hour schedule Trains/ arranges worker training Makes decisions about needs and services 6

Cash & Counseling Demonstration and Evaluation 3-state demonstration Offers Medicaid participants with disabilities more choices about how to get help at home Hire friends, family or neighbor Flexible budget Goods and services 12-state expansion 7

Cash & Counseling Demonstration and Evaluation (CCDE) Study Populations Adults with disabilities (Ages 18-64) Elders (Ages 65+) Children with developmental disabilities (FL only) Evaluation 8

Self-directing participants were up to 90% more likely to be very satisfied with how they led their lives. 9

Self-direction significantly reduced participants unmet personal care needs. 10

Primary caregivers were significantly more satisfied with their lives in general. 11

Self-direction did not result in the increased misuse of Medicaid funds or abuse of participants. 12

Prevalence of Self-Direction: 1970 s-80 s WA AK Hawaii OR CA NV ID MT WY AZ CO NM TX OK KS NE SD ND MN IA MO AR LA MS TN KY IL WI MI IN WV AL GA FL SC NC VA PA NY DC MD DE NJ RI MA NH VT ME OH CT 13

Prevalence of Self-Direction: 2000 s WA AK Hawaii OR CA NV ID MT WY AZ CO NM TX OK KS NE SD ND MN IA MO AR LA MS TN KY IL WI MI IN WV AL GA FL SC NC VA PA NY DC MD DE NJ MA NH VT ME OH CT 14 RI DC

Who s Paying the Bills? Funding Source Number of Programs Percentage of Reporting Programs (n=239) Medicaid State Plan 17 7% Medicaid 1115 Demonstration Waiver 13 5% Medicaid 1915(b) Waiver 3 1% Medicaid 1915(c) Waiver 142 60% Medicaid 1915(i) State Plan Option 2 1% Medicaid 1915(j) State Plan Option 5 2% Medicaid 1915(k) State Plan Option 4 2% Veterans' Administration 31 13% State General Revenue 7 3% Private Pay 0 0 Other funding mechanisms 11 5% 15

Self-Direction Enrollment and Program Size Total enrollment is over 1,000,000 Number of programs is approximately 250 Average program size is about 4,000 participants; the range is from 2 to 500,000 30% increase in number of participants served since 2013 Data source: 2016 National Inventory 16

Self-Direction in Head Injury 12 Head Injury programs allow self-direction Numbers self-directing are small. Many have 20 or fewer participants 100 participants is a lot Less than 0.1% of all people self-directing are from head injury programs 17

Operationalizing Self-Direction

Human Elements in Self-Direction Participant/Consumer Person receiving and directing care. Representative Unpaid person appointed by the participant to assist in directing services. Also known as surrogate or designee. Worker Someone chosen by the individual to provide direct personal assistance. May include friends and family. Counselor/Support Broker The person who assists the participant in developing and carrying out his/her plan. 19

Other Elements of Self-Direction Individual Budget An allocated amount of funds that a participant can use to hire workers and/or purchase other goods and services to meet their support needs. The term flexible budget often indicates the ability of the budget to be used as a participant moves from one setting to the next. Spending Plan The spending plan specifies how the allocated amount or individual budget will be used. Will staff be hired? Will goods Entity appointed to and services be purchased? Financial Management Services (FMS) Assist an individual to manage fiscal employment and/or budget responsibilities. 20

Essential Roles in Self-Direction Counselor Embraces person-centeredness Explains the program Completes enrollment Collaborates with participant to complete the assessment, service plan, spending plan, and reassessments Offers skills training Partners with participant in program monitoring and changes FMS Assures that spending plan is followed Carries our required background checks Pays invoices including timesheets Figures tax liability and pays taxes Maintains savings Provides accounting reports Participant Makes decision based on individual budget Hires, manages, and dismisses workers Sets tasks Trains (or arranges for training) of workers Evaluates worker performance Determines goods and services to be purchased 21

Assuring Program Quality and Participant Safety Counselor Contacts participant regularly and meets periodically and as needed Observes participant and surroundings for signs of problems Addresses,with FMS, problems with spending plan Files/assists in filing incident reports FMS Reviews spending to assure billed items and hours make sense and adhere to spending plan Regularly issues and reviews spending reports Contacts participant and counselor if spending problems Participant Follows program rules Asks for assistance if problems arise Works with FMS/counselor to resolve problems 22

A Word on Fraud CCDE showed very low rates of fraud CMS Office of Inspector General (OIG) has issued several alerts and reports Latest OIG figures (2012 2015) suggest fraud rate of 0.02% Does fraud happen? Yes Does fraud happen a lot? No Safeguards Consumer training FMS/counselor oversight 23

Self-Direction in Vermont

History Choices for Care

Choices for Care 2005 2015: Was a separate 1115 Demonstration Waiver before becoming part of the Global Commitment (GC) to Health Demonstration Waiver 2005: Program rolled out in with a Consumer/Surrogate Directed Option for traditional home based services 2008: State received funds from the Robert Wood Johnson Foundation to start a Cash & Counseling Pilot, called Flexible Choices 2017: State requested to add a line as a placeholder in the GC amendment to include TBI services in Choices for Care, however was not allowed

Self-Direction for Individual s with Brain Injury How does it work?

Vermont's Choices for Care Program Choices for Care Home-Based Traditional Flexible Choices Clinical & Financial Eligibility Nursing Home Level of Care Shared Living Enhanced Residential Care Nursing Facility 28

Choices for Care Program Traditional Consumer/Surrogate-Directed Services Personal Care (2 week budget) Companion/Respite (calendar year budget) Enroll with FMS Have case management to assist 29

Choices for Care Program Flexible Choices A flexible budget option that allows the purchase of services directly from TBI providers Enroll with FMS Have an Advisor to setup a budget May or may not have a Case Manager Invoicing 30

Self Direction- Scope Choices for Care Option # Participants Average Monthly Cost Flexible Choices 136 $2700 Average Monthly Cost = Personal Care + Companion/Respite Only Traditional Self- Directed Traditional Surrogate Directed 405 $2500 559 $2500 Agency Directed 796 $4100 ** 10% of individuals enrolled in Flexible Choices have a Brain Injury 31

Surrogate What is it?

Surrogate Is an unpaid voluntary role where an individual acts as an employer on behalf of a program participant Expectations: Understand and follow program requirements/understands program participants care needs and goals Manage employment forms to Hire, train, supervise and/or dismiss employees Develop a work schedule Authorized employee timesheets Communicate regularly with the program participant and case manager Keep track of budget and notify FMS of any changes

Surrogate Relationship Surrogate Participant Advisor FMS Employees 34

How does an Individual with Brain Injury use Self- Directed Services? Flexible Choices Story

Story: 27 Year Old Male Motor Vehicle Accident in 2014= severe TBI and quadriplegia Defined by MD as being in a Vegetative State ; prescribed heavy doses of muscle relaxants; non-responsive Enrolled in Flexible Choices in 2017 Mother = Surrogate Created multi-disciplinary care team and used Flex Choices budget to purchase the following services: acupuncture, massage therapy, chiropractic care, naturopath, swimming therapy, hyperbaric oxygen therapy, infrared light therapy device, brainwave therapy training tools etc. all not usually covered by traditional insurance After 9 months of starting these treatments/services, he laughed out loud during a funny movie and a funny family incident His mother stated Because everyone is different, Flexible Choices allows for the freedom to develop each individual s personal recipe for progress and success. 36

Monitoring for Medicaid Fraud in Self-Directed Programs What does Vermont do?

Monitoring for Medicaid Fraud Vermont has room to improve Recent Audit indicates: State needs to work with FMS to implement more controls (flags) at certain decision points when time sheets are processed against a budget State needs to ensure there are proper controls and caps in the Medicaid claims processing system E.g. Overlapping Hospital stays- were able to bill & get paid for someone being in a hospital Ways to improve system through the EVV Working with Medicaid Fraud- Program Integrity Unit and FMS to look at periodic analysis of claims and pass along things that look suspicious 38

Monitoring for Program Quality What does Vermont do?

Monitoring for Program Quality National Core Indicators Survey- Aging and Disabilities (NCI-AD) FMS has phone system to monitor customer quality/experience 40

Questions? Sara.Lane@Vermont.gov Merle@appliedselfdirection.com 41