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Ann Turnbull, Matt Stowe, Denise Poston Beach Center on Disability University of Kansas

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. Agenda . Introduction – Setting the Context

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Ann Turnbull, Matt Stowe, Denise Poston Beach Center on Disability University of Kansas

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  1. 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

  2. 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

  3. 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 Center’s Spring / Summer 2005 Newsletter at www.beachcenter .org Click on “newsletter”

  4. Friends

  5. Sending Emails www.ablelink.org

  6. Having a Home of One’s Own

  7. Cheers Connections

  8. Wellness

  9. Employment

  10. 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

  11. 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

  12. 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

  13. 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

  14. 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

  15. 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

  16. Family Quality of Life • Family Interaction • Parenting • Emotional Well-Being • Physical / Material Well-Being • Disability-Related Supports

  17. Scenario #1 Managing AJ’s life Knowing specific details of AJ’s 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 AJ’s company Knowing generalities of AJ’s 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 Impact on Family Quality of Life Domains - Family Interaction and Parenting -

  18. Scenario #1 Feeling the stress of full responsibility – it’s 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 it’s a good thing! Impact on Family Quality of Life Domains Emotional Well-Being

  19. 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 Impact on Family Quality of Life Domains Disability-Related Supports

  20. Medicaid Waiver Law and Policy -- Matthew J. Stowe matstowe@ku.edu

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

  22. Types of Medicaid Waiver • Section 1915 Waivers • (b) Managed Care Waivers • (c) HCBS waiver • (b/c) Combined waiver • Section 1115 Waivers • Demonstration projects

  23. 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

  24. 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

  25. 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?

  26. 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

  27. 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 10:44C (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]

  28. 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

  29. A Proposal • Let’s put it together. • We’ll start: • The Beach Center will provide a form so the information can be standardized • We’ll 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

  30. 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

  31. Draft of Waiver Information Form • STATE: • WAIVERS AVAILABLE FOR DD/MR: ---------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------- [filled out for each state]

  32. 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.):

  33. 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 _____________________________________

  34. 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:_______________________________________________________________________________________________________________________________________________________

  35. 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:____________________________________________________________________________________________

  36. 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

  37. 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:_______________________________________________________________________________________________________________________________________________________

  38. 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:___________________________________________________________________________________________________________________________________________________________

  39. 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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