Individual / Family Control of Budgets, Supports, and Services: Supporting Families to Support Their Family Member

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Individual / Family Control of Budgets, Supports,
and Services Supporting Families to Support
Their Family Member

• Ann Turnbull, Matt Stowe, Denise Poston
• Beach Center on Disability
• University of Kansas
• www.beachcenter.org

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Agenda

• Introduction Setting the Context
• Nuts and Bolts of Supports and Services
• An Enviable Life
• Roles and Responsibilities of Families
• How to make the Enviable Life a reality
• Medicaid Waiver Law and Policy
• Paying for the Enviable Life

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Setting the Context

• Medicaid HCBS Waiver Services
• Age Range
• Historically adults
• Families and children
• Terminology
• Service model Individual/family control of
  budgets, supports, and services
• Outcomes Self determination and quality of life
• Major Components
• Person/family-centered planning
• Individual budgets
• Supports brokerage

See the Beach Centers Spring / Summer 2005
Newsletter at www.beachcenter .org Click on
newsletter
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Friends
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Sending Emails
www.ablelink.org
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Having a Home of Ones Own
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Cheers Connections
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Wellness
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Employment
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The Roles and Responsibilities of Families

• Deciding to choose individual/family control as
  an option
• Who decides?
• What will our roles be?
• How is this different from what we are doing now?
• Who can help us with this?
• What kind of time will this take?
• What kind of skills will this take?
• The key to these questions is

Support Brokerage
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Deciding on Preferred Roles

• Decision between individual with disability and
  family members depends on
• Life stage
• Cognitive ability
• Preferences for independence,
• control, and personal responsibility
• Availability of resources
• Availability of support broker

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A Support Broker Is . . .

• Independent from an agency
• Employed by the person with a disability
• A bridge-builder between person and supports
• Connected within the community
• Flexible, creative, skilled, but not necessarily
  degreed
• Facilitates the agenda of the person with a
  disability
• Hired for specific tasks or full service

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Responsibilities

• Providing direct support
• Supervising direct support staff
• Backing up direct support staff in emergencies or
  no-shows
• Coordinating supports
• Developing and monitoring the budget
• Setting vision and goals
• Facilitating support team
• Roles may change depending on locations home,
  work, community

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Scenario 1 No Support Broker

• Convening and facilitating team
• Recruiting, hiring, training, scheduling,
  supervising, and supporting support staff and
  housemates
• Providing direct support
• Back up on holidays, emergencies, behavioral
  incidents
• Developing budget monitoring on weekly basis
• Completing required oversight reports
• Estimated time per week 30 hours

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Scenario 2 Support Broker Available

• Participating in team being creative
• Provide input on support staff and housemates
  helping to train
• Spend quality time as family member
• Provide input to budget development
• Estimated time per week 10 hours

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Family Quality of Life

• Family Interaction
• Parenting
• Emotional Well-Being
• Physical / Material Well-Being
• Disability-Related Supports

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Impact on Family Quality of Life Domains -
Family Interaction and Parenting -

• Scenario 1
• Managing AJs life
• Knowing specific details of AJs activities too
  much involvement in personal business
• In the middle of behavior episodes target of
  aggressive behavior
• Trying to teach and model SD while responsible
  for daily decisions

• Scenario 2
• Enjoying AJs company
• Knowing generalities of AJs activities but not
  too involved in his personal business
• Somewhat removed from behavior episodes no
  longer target
• Support broker as buffer AJ has more control

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Impact on Family Quality of Life Domains
Emotional Well-Being

• Scenario 1
• Feeling the stress of full responsibility its
  all up to me
• Intensive time and energy commitment little
  time for self-renewal or long-term planning
• Feeling in control knowing what is going on

• Scenario 2
• Sharing the responsibility reducing stress.
• Moderate time and energy commitment more time
  for self renewal and vision setting
• Sharing some of the control but its a good
  thing!

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Impact on Family Quality of Life Domains
Disability-Related Supports

• Scenario 1
• Supports and services based on who and what I
  know
• My energy goes toward short-term and daily
  activities

• Scenario 2
• Supports and services based on more than just my
  connections
• My energy can be focused more on long-term
  visions and goals

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Medicaid Waiver Law and Policy -- Matthew J.
Stowe matstowe_at_ku.edu
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Medicaid Waivers

• Medicaid Generally
• Origins of Medicaid Waivers
• Eligibility
• Ages
• Population
• Means Test
• Residency/geographic

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Types of Medicaid Waiver

• Section 1915 Waivers
• (b) Managed Care Waivers
• (c) HCBS waiver
• (b/c) Combined waiver
• Section 1115 Waivers
• Demonstration projects

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Independence Plus Initiative

• Not a statutorily derived waiver type
• A federal agency created program under the 1915
  and 1115 waivers intended to provide additional
  flexibility to states to support
  self-determination and functional independence in
  the community
• Why the IPI is important

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Independence Plus Initiative

• How it works
• Application Process
• Requirements for IPI
• Choice of IPI Waiver Type
• The 1915(c) waiver template
• The 1115 waiver template
• Where they are being used

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STATE YEAR APPROVED MECHANISM TARGET POPULATION PROGRAM FOCUS
California August, 2004 Section 1115 66,000 persons. Elderly, blindness, or disability Self-directed personal care assistance
Connecticut January, 2005 Section 1915(c) 3,000 persons. MR/DD Personal care, supported employment, group day services, vehicle modification, companion services and family training
Delaware November, 2004 Section 1915(c) 30 persons. Elderly or physical disability Attendant and personal care services, adult day health, respite, supports brokerage, fiscal and employer agent services and medical equipment and supplies
Florida May 2003 Section 1115 3,500 persons Elderly, adults and children, PD and DD Cash and Counseling program
Louisiana April 2003 Section 1915(c) 4,200 persons. DD/MR Consumer Direction
Maryland October 2004 Section 1915(c) MR/DD Respite, supported employment, personal support, assistive technology, and adaptive equipment
New Hampshire December 2002 Section 1915(c) 300 children with DD Family participation in service delivery and individualized budget
North Carolina December 2004 Section 1915(c) 335 persons. Elderly and DD Adult day health, respite, care advice, financial management, personal assistant and other services
North Carolina October 2004 Section 1915(b/c) combination 275 persons MR/DD Managed care and personal care, adult day, respite, and home delivered meals
South Carolina March 2003 1915(c) 900 persons. Elderly and PD Consumer control., Personal care, adult day, respite, care advisor, financial management
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Where is New Jersey?

• What I know
• New Jersey has at least one self-determined
  waiver.
• Very respected program.
• What authority? 1915 or 1115?
• Did they use the Independence plus template?

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Consulting the CMS website

• CMS state-by-state database for information on
  state waiver programs
• Difficult to use to answer questions
• Limited information
• Difficulty navigating
• Not easy to understand
• Mistakes

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CLICKED ON THE LINK New Jersey HCBS Waiver
MR/DD (0031) 6/29/99
New Jersey Home and Community Based Services
WaiversUnder 1915(c) Authority New Mexico HCBS
Waiver MR/DD (0031) AMENDMENT To establish
requirements for provision of residential
services to persons with head injuries.
SUBCHAPTER 1 - General Provisions 1044C (PDF
337KB) Appendix B-2 - "Provider Qualifications"
(PDF 57KB)Attachment 3(4) - "Support
Coordinator" (PDF 11KB) Attachment 4 -
"Respite Provider Standards" (PDF 29KB) EXAMPLE
CUT AND PASTED FROM CMS WEBSITE
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THE NEED FOR STATE WAIVER INFORMATION

• Important for
• Families, researchers, policy makers
• What is true of CMS site is true generally
• Limited and variable information by state
• Difficulty finding and navigating
• Not easy to understand even if found
• Mistakes, or no assurance of accuracy
• Most importantly, information is not available
  together in one place

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A Proposal

• Lets put it together.
• Well start
• The Beach Center will provide a form so the
  information can be standardized
• Well put it up on our webpage for both input and
  retrieval of information
• We will do outreach request (DD Counsels)
• We will try to verify information
• But we need others to find the information and
  fill out the form

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Draft of Form

• We welcome your comments and suggestions
• We would like to complete a draft by the end of
  next week and have it online as soon as possible
• Principles for draft
• Keep it simple and short
• Key information needed

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Draft of Waiver Information Form

• STATE
• WAIVERS AVAILABLE FOR DD/MR
• -------------------------------------------------
  --------------------------------------------------
  --------------------------------------------------
  --------------------------------------------------
  ---------------------------------------------
• filled out for each state

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Draft of Waiver Information Form

• WHO TO CONTACT
• WHO IS ELIGIBLE
• Age eligibility
• Disability population eligibility
• Income and resource eligibility
• Residency/geographic eligibility
• ELIGIBILITY SCREENING METHOD (DDP, SIS, etc.)

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Draft of Waiver Information Form

• WAITING LIST None Short (up to 3 months)
  Long (more than 3 months)
• AVAILABLE SERVICES LIST
• LINK(S) TO MORE INFORMATION
• A. Waiver Application ___________________________
  __________
• B. Family Friendly Information
  _____________________________________
• C. Other
• _____________________________________

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Draft of Waiver Information Form

• INDIVIDUAL/FAMILY CONTROL
• May the individual choose to go off the waiver or
  use a different waiver at any time?
• YES NO
• COMMENT__________________________________________
  __________________________________________________
  __________________________________________________
  _________

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Draft of Waiver Information Form

• B. Under this waiver, does the individual (or
  family) choose
• (1) where to live,
• (2) what services are provided (including
  intensity of service),
• (3) who will provide services (hiring,
  oversight, and firing)
• (4) what training providers will receive or will
  have received
• (5) what employment opportunities and community
  activities will be pursued
• YES NO YES NO (see comment below)
• COMMENT__________________________________________
  __________________________________________________
  

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Draft of Waiver Information Form

• May the individual be the employer of record
  under this waiver?
• YES NO
• May the participant manage their own cash
  allowance directly?
• YES NO
• E. Are fiscal intermediaries used?
• YES NO

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Draft of Waiver Information Form

• F. Is independent support brokerage available?
• YES NO
• G. Do providers have to be licensed, certified,
  or otherwise listed as an authorized provider
  (such as through a provider agreement)?
• YES NO
• COMMENT__________________________________________
  __________________________________________________
  __________________________________________________
  _________

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Draft of Waiver Information Form

• H. Can informal providers (friends and family) or
  legally responsible individuals be hired?
• (1) As unpaid informal providers
• (2) As paid service providers
• (3) As independent support brokers
• YES NO YES NO (See Comment)
• COMMENT__________________________________________
  __________________________________________________
  __________________________________________________
  _____________

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Draft of Waiver Information Form

• ADDITIONAL INFORMATION (Additional elements
  about the waiver)
• Examples
• The waiver allows some asset and income increases
  without reduction in benefits.
• The state can deny enrollment because of the high
  cost of HCBS services for an individual.
• The waiver allows for direct payment for services
  (rather than reimbursement).
• Individuals may use funds under the waiver to
  hire a job coach.
• The individual may use funds under the waiver to
  start a small business.

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THANK YOU

• Ann Turnbull, Denise Poston, and Matthew Stowe
• Beach Center on Disability
• University of Kansas
• http//www.beachcenter.org/