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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.

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Presentation on theme: "Individual / Family Control of Budgets, Supports, and Services: Supporting Families to Support Their Family Member Ann Turnbull, Matt Stowe, Denise Poston."— Presentation transcript:

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

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 Click on “newsletter”

4 Friends





9 Sending Emails

10 Having a Home of One’s Own



13 Cheers Connections



16 Wellness


18 Employment


20 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

21 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

22 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

23 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

24 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

25 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

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

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

28 Impact on Family Quality of Life Domains Emotional Well-Being 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!

29 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

30 Medicaid Waiver Law and Policy -- Matthew J. Stowe

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

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

33 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

34 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 Independence Plus Initiative

35 STATEYEAR APPROVED MECHANISMTARGET POPULATIONPROGRAM FOCUS CaliforniaAugust, 2004Section 111566,000 persons. Elderly, blindness, or disability Self-directed personal care assistance ConnecticutJanuary, 2005Section 1915(c)3,000 persons. MR/DD Personal care, supported employment, group day services, vehicle modification, companion services and family training DelawareNovember, 2004Section 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 FloridaMay 2003Section 11153,500 persons Elderly, adults and children, PD and DD Cash and Counseling program LouisianaApril 2003Section 1915(c)4,200 persons. DD/MR Consumer Direction MarylandOctober 2004Section 1915(c)MR/DD Respite, supported employment, personal support, assistive technology, and adaptive equipment New HampshireDecember 2002Section 1915(c)300 children with DD Family participation in service delivery and individualized budget North CarolinaDecember 2004 &Section 1915(c)335 persons. Elderly and DD Adult day health, respite, care advice, financial management, personal assistant and other services October 2004Section 1915(b/c) combination 275 persons MR/DD Managed care and personal care, adult day, respite, and home delivered meals South CarolinaMarch 20031915(c)900 persons. Elderly and PD Consumer control., Personal care, adult day, respite, care advisor, financial management

36 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?

37 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 Consulting the CMS website

38 New Jersey Home and Community Based Services Waivers Under 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] CLICKED ON THE LINK: New Jersey HCBS Waiver: MR/DD (0031) 6/29/99

39 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

40 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

41 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

42 Draft of Waiver Information Form 1)STATE: 2)WAIVERS AVAILABLE FOR DD/MR: ------------------------------------------------------- ------------------------------------------------------- ------------------------------------------------------- ------------------------------------------------------- ------------------------ [filled out for each state]

43 3)WHO TO CONTACT: 4)WHO IS ELIGIBLE: Age eligibility: Disability population eligibility: Income and resource eligibility: Residency/geographic eligibility: 5)ELIGIBILITY SCREENING METHOD (DDP, SIS, etc.): Draft of Waiver Information Form

44 6)WAITING LIST: None Short (up to 3 months) Long (more than 3 months) 7)AVAILABLE SERVICES LIST: 8)LINK(S) TO MORE INFORMATION: A. Waiver Application _____________________________________ B. Family Friendly Information _____________________________________ C. Other _____________________________________ Draft of Waiver Information Form

45 9)INDIVIDUAL/FAMILY CONTROL: A.May the individual choose to go off the waiver or use a different waiver at any time? YESNO COMMENT:_______________________________ ________________________________________ ________________________________________ ________________________________________ Draft of Waiver Information Form

46 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 YESNO YES & NO (see comment below) COMMENT:__________________________________________ __________________________________________________ Draft of Waiver Information Form

47 C.May the individual be the employer of record under this waiver? YESNO D.May the participant manage their own cash allowance directly? YESNO E. Are fiscal intermediaries used? YESNO

48 Draft of Waiver Information Form F. Is independent support brokerage available? YESNO G. Do providers have to be licensed, certified, or otherwise listed as an authorized provider (such as through a provider agreement)? YESNO COMMENT:_______________________________ ________________________________________ ________________________________________ ________________________________________

49 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 YESNOYES & NO (See Comment) COMMENT:_______________________________________ _______________________________________________ _______________________________________________ ______________________

50 Draft of Waiver Information Form 10) 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.

51 THANK YOU Ann Turnbull, Denise Poston, and Matthew Stowe Beach Center on Disability University of Kansas

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