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

• 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

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 Newsletterat www.beachcenter .org

Click on “newsletter”

Friends

Sending Emails

www.ablelink.org

Having a Home of One’s Own

Cheers Connections

Wellness

Employment

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

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

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

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

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

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

Family Quality of Life

• Family Interaction

• Parenting

• Emotional Well-Being

• Physical / Material Well-Being

• Disability-Related Supports

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

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!

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

Medicaid Waiver Law and Policy --

Matthew J. Stowe matstowe@ku.edu

Medicaid Waivers

• Medicaid Generally

• Origins of Medicaid Waivers

• Eligibility

Ages

Population

Means Test

Residency/geographic

Types of Medicaid Waiver

• Section 1915 Waivers– (b) Managed Care Waivers – (c) HCBS waiver – (b/c) Combined waiver

• Section 1115 Waivers– Demonstration projects

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

• 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

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 personsElderly, 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

October 2004 Section 1915(b/c) combination

275 personsMR/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

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?

• 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

New JerseyHome 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

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

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

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

Draft of Waiver Information Form

1) STATE:2) WAIVERS AVAILABLE FOR DD/MR:

----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

[filled out for each state]

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

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

9) INDIVIDUAL/FAMILY CONTROL:

A. May the individual choose to go off the waiver or use a different waiver at any time?

YES NO

COMMENT:_______________________________________________________________________________________________________________________________________________________

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:____________________________________________________________________________________________

Draft of Waiver Information Form

Draft of Waiver Information FormC. May the individual be the employer of record under

this waiver?YES NO

D. May the participant manage their own cash allowance directly?

YES NO

E. Are fiscal intermediaries used?YES NO

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:_______________________________________________________________________________________________________________________________________________________

Draft of Waiver Information FormH. 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:___________________________________________________________________________________________________________________________________________________________

Draft of Waiver Information Form10) 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.

THANK YOU

Ann Turnbull, Denise Poston, and Matthew StoweBeach Center on Disability

University of Kansas

http://www.beachcenter.org/