Creating Whole Lives and Accessing
Resources in Ways that Promote
Inclusive, Self-Determined Lives
Ann Turnbull
Martha Blue-Banning
National Down Syndrome Congress
36th National Convention
July 11, 2008
The Beach Center on Disability
University of Kansas
www.beachcenter.org
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Whole L.I.V.E.S: Life of Inclusion, Valued relationships,
Economic control, and Self-determination.
2
AGENDA
Introduction
Creating a Vision
Creating Supports
Funding Sources
Asset
Development
Whole L.I.V.E.S.
Microsite
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Building a Vision
Great expectations are not etched in stone they are images of the possible
Everyone needs a dream for the future
Dreams provide the inspiration to focus
your planning goals
Once you establish the goals, then you can
figure out how to make it happen
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Inviting Support
Think of the people already in your
life. Who is there when you need
support? Immediate family, extended
family: cousins, uncles, grandparents,
friends, co-workers, teachers
Who helped or supported your
family?
Who has information you need or who
can help you make new connections?
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MAPS
What is ______’s history?
What is your dream for ______?
What is your nightmare?
Who is ______?
What are ______’s gifts?
What are ______’s needs?
What would ______’s ideal day be like?
Source: Forest, M., & Pearpoint, J. C. (1992, October). Putting all kids on the MAP. Educational Leadership.
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What is Your Vision for the Future?
Consider all aspects of the person’s life
–Employment
–Housing
–Community inclusion (recreation,
volunteering)
–Relationships (family, friends)
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AGENDA
Introduction
Creating a Vision
Creating Supports
– Employment
Customized Employment
Vocational Rehabilitation
– Home
– Community Inclusion
Funding Sources
Asset Development
Whole L.I.V.E.S. Microsite
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Customized Employment
Knowledge Bank
http://www.beachcenter.org/wisdom_based_action/customized_employment/default.aspx
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Employment Resources
Job Accommodation Network
The Job Accommodation Network is a
service of the Office of Disability
Employment Policy (ODEP) of the U.S.
Department of Labor. JAN's mission is to
facilitate the employment and retention of
workers with disabilities
http://www.jan.wvu.edu/english/whatis.htm
Find local Vocational Rehabilitation Offices:
http://www.jan.wvu.edu/cgiwin/TypeQuery.exe?902
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Other Employment Resources
Independent Living Centers
http://www.ncil.org/
The Training and Technical Assistance
for Providers (T-TAP)
http://www.t-tap.org/
Virginia Commonwealth University
RRTC on Workplace Supports and Job
Retention
http://www.worksupport.com/index.cfm
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Wants to
be on the
go
Loves
to eat
Job
Possibilities
Likes
uniforms
Is
VERY
social
Likes
variety
Is a
morning
person
Is
Independent
Enjoys
physical
activity
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Employment Activity
What are ________’s interests?
What does _______ like to do (e.g., be inside or outside,
have varied or repetitive tasks)?
What are ________’s strengths and abilities?
What is the best time of day for ______ ?
Work alone or with others?
Job
Possibilities
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AGENDA
Introduction
Creating a Vision
Creating Supports
– Employment
– Home
Housing Considerations
Personal Assistants (PA)
Resources
Community Inclusion
Funding Sources
Asset Development
Whole L.I.V.E.S. Microsite
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What should I consider when
choosing a home in the community?
Rent or own
Type: condominium, duplex, single family home,
mobile home, or apartment
Accessible
Location: public transportation, traffic, shopping,
parks and recreation, and neighborhood type
Housing cost
Utilities deposits and monthly cost: electric,
water, gas, garbage
Maintenance: yard and home (interior/exterior)
Neighbors are friendly and supportive
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Personal Assistant Activity
List important
personal assistant
qualities, skills,
experience.
Nonnegotiable
Negotiable
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Qualities We Look For In Ryan’s PAs
Nonnegotiable
– Flexible
– Non controlling
– Ability to respect and honor
Ryan’s choices
– Sense of humor
– Patient
– Creative problem-solver
– Good communication skills
– Reliable and trustworthy
– Team player
Negotiable
–
–
–
–
–
No children
One-year commitment
Nonsmoker
Outgoing personality
Enjoys sports
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What Resources are
Available for Housing?
The U.S. Department of Housing and
Urban Development (HUD) is a federal
agency that administers several
programs that provide funds for
housing for low-income families at the
local level.
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Section 8 Program
Housing Assistance Types
Project-based rental assistance
Tenant-based rental assistance
Homeownership assistance
Section 8 Made Simple
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Housing Vouchers
The Section 8 Housing Choice Voucher Program is
HUD’s largest program for assisting individuals with
low incomes to afford housing.
Great resources for information on housing choice
vouchers can be found at:
http://www.hud.gov/offices/pih/programs/hcv/
Housing Choice Voucher Fact Sheet
Find your local Public Housing Authority
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HUD Homeownership Vouchers
Operate similar to Housing Choice Vouchers,
except payment goes towards mortgage,
instead of rent.
Must have a Housing Choice Voucher to
become eligible for the Homeownership
Voucher Program
Not all PHAs operate Homeownership
Programs.
Homeownership Voucher
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AGENDA
Introduction
Creating a Vision
Creating Supports
– Home
– Employment
– Community Inclusion
Funding Sources
Asset Development
Whole L.I.V.E.S. Microsite
22
Community Inclusion Activity
Where in the community can _____ meet
new friends?
What are possible places for “Cheers
Connections for _____?
What kind of hobbies or activities does
____ especially enjoy?
What clubs or organizations would _____
be interested in?
What are volunteer possibilities that _____
would enjoy?
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Natural Ties
Pairs university organizations with people
with disabilities
Provides stable relationships
Offers individual and
group activities
http://www.youtube.com/watch?v=3lxCkQUZYkk
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AGENDA
Introduction
Creating a Vision
Creating Supports
Funding Sources
– Medicaid
– Medicaid Home and
Community Based Services
Waiver
– Supplemental Security Income (SSI)
– Social Security Disability Insurance
(SSDI)
Asset Development
Whole L.I.V.E.S. Microsite
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What is Medicaid?
Medicaid is a federal entitlement
program designed to help states meet
health-care costs for low-income and
medically needy populations.
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Medicaid Eligibility
Medicaid eligibility falls into two groups
– Categorical—persons who fit in a specific
category whom Federal law permits coverage
(be age 65 or above, be blind, have
disabilities).
– Financial—income and assets do not exceed
state threshold
State specific Medicaid income and asset limits
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Medicaid
Medicaid has two broad sectors
–health care
–long-term services
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Medicaid Long-Term Services
Long-term services are provided to
individuals that require continuing
assistance and/or treatment.
These services include:
– Institutional services
– Home and community services
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Don’t Get Lost in the
Labyrinth of Medicaid Information
To avoid getting lost:
– Visit www.thedesk.info for Medicaid
information for people with cognitive
disabilities
– Talk to your state DD Council
http://www.nacdd.org/councils.htm#table
– The Community Living Exchange
Collaborative
http://www.hcbs.org/aboutUs.php
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Home and Community
Based-Services (HCBS) Waiver
The HCBS waiver program is an option
available to states to provide integrated
community-based long-term care services
and supports to qualified Medicaid eligible
recipients.
Centers for Medicare and Medicaid Services
Understanding Medicaid Home and
Community Services: A Primer
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Services Available Under HCBS
Case management
Day supports
Behavioral support
Vehicle adaptation
Therapies (e.g., physical,
occupational, speech)
Specialized medical
equipment and services
Home heath aide
Psychosocial rehabilitation
Personal care
Clinic services
Respite
Live-in caregiver
Transportation
Expanded habilitation
– Prevocational and
supported employment
– Education
Habilitation
– Residential
– Day
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What is Participant Direction
of HCBS Waiver Funds?
Provides waiver participants the opportunity to
direct their services :
– Control the supports and services they need
– Allocate funds to pay for the services
– Take responsibility to control and direct funds
With help from their circles of support, they:
–
–
–
–
Make decisions on amount and type of supports
Define staff duties and pay rates
Hire, schedule, and fire staff
Have maximum flexibility to purchase needed goods and services
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Terms You May Encounter Related to
Greater Choice and Control of Funding:
Self-determination
Self-direction
Individualized funding
Self-managed services
Consumer-directed services
Cash and counseling
Participant-directed services
Direct funding
Individual control of funding
Participant direction
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Participant Direction Opportunities
Participant-Employer Direction
– Participant is supported to recruit, hire, and supervise
the workers who furnish supports.
– Participant rather than a service provider agency
carries out employer responsibilities for workers.
Participant-Budget Direction
– Participant has the authority and accepts the
responsibility to manage his or her budget.
– Participant makes decisions about obtaining the goods
and services that are authorized in the individual's
service plan and manages the budget.
Centers for Medicare and Medicaid Services (CMS)
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What is a Microboard?
A Microboard is formed when a small (micro)
group of committed family and friends join
together with a person who is vulnerable to
create a non-profit organization (board).
Together this small group of people address
the person's planning and support needs in
an empowering and customized fashion. A
Microboard comes out of the person
centered planning philosophy and is
therefore created for the sole support of one*
individual.
TENNESSEE MICROBOARDS ASSOCIATION, INC.
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Microboard Resources
Vela http://www.microboard.org/
Tennessee Microboards Association
http://www.tnmicroboards.org./
Microboard Development Workbook
http://www.ihd.umkc.edu/Resources/Microbo
ard%20Workbook.pdf
Establishing a Microboard
http://www.cdhs.state.co.us/ddd/PDFs/DIR_M
icroboard_Manual.pdf
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AGENDA
Introduction
Creating a Vision
Creating Supports
Funding Sources
– Medicaid
– Medicaid Home and Community
Based Services Waiver
– Supplemental Security
Income (SSI)
– Social Security Disability
Insurance (SSDI)
Asset Development
Whole L.I.V.E.S. Microsite
38
SSI and SSDI
The Social Security and Supplemental
Security Income disability programs
are Federal cash assistance programs.
While these two programs are different
in many ways, both are administered by
the Social Security Administration and
only individuals who have a disability
and meet medical criteria may qualify
for benefits under either program.
http://www.ssa.gov/disability/
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Supplemental Security Income
Supplemental Security Income (SSI) is a
Federal income supplement program.
It is designed to help low-income individuals
who are (a) 65 and older or (b) are blind or (c)
have a disability.
It provides monthly cash payments to meet
basic needs for food, clothing, and shelter.
The maximum Federal SSI benefit for 2008 is
$637 for an individual and $956 for a couple.
SSI Homepage
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2008 SSI Asset / Income Limits
Income thresholds
$940 per month
Resource limit (assets, savings, etc.)
$2,000 (individuals)
$3,000 (couples)
Benefits eligibility screening tool
http://www.govbenefits.gov/govbenefits_en.portal
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Additional SSI Resources
Social Security office locator
SSI booklet
Understanding Supplemental
Security Income
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What is Social Security
Disability Insurance (SSDI)?
– Is a federal cash benefit that may be
available if a person is disabled.
– Is a monthly benefit for people who have
worked in the past and paid Social
Security taxes
(http://www.cms.hhs.gov/apps/firststep/content/ssdi-qa.html#general)
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Social Security
Disability Insurance (SSDI)
– Pays benefits to people who are unable
to work for a year or more because of
their disability
– Is financed with Social Security taxes
paid by workers, employers, and selfemployed persons.
What you need to know about SSDI
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For More Information on
SSI or SSDI
Visit: http://www.ssa.gov
Or
Call: 1-800-772-1213
To locate your local Social Security office:
https://s044a90.ssa.gov/apps6z/FOLO/fo001.jsp
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Other
(food stamps, private organizations)
Food Stamps eligibility
– Resources = $3,000 limit if household includes individual with
disability or person over 60
– SSI and TANF benefits not included
– Resources include cash, bank accounts and other property (not
including home and land)
– Household income limits vary by size and change yearly
http://www.ssa.gov/pubs/10100.html
– social security online – food stamps and other nutrition programs
www.foodstamps-step1.usda.gov
– online prescreening tool for food stamp eligibility
– also has a link to state 1-800 numbers to find the office nearest you where you can
apply
http://www.fns.usda.gov/fsp/applicant_recipients/fs_Res_Ben_Elig.htm
– Fact sheets on food stamp eligibility, resources, and income limits
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AGENDA
Introduction
Creating a Vision
Creating Supports
Funding Sources
Asset Development
– Housing
– Secured credit cards
– PASS plan (plan for
achieving selfsufficiency)
Whole L.I.V.E.S. Microsite
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What is Asset Building?
Assets are defined as capacities and
resources that enable individuals and
families with disabilities to identify,
choose, and implement activities that
sustain and enhance their quality of life
experience and improve their long-term
economic, social, and psychological wellbeing
Megan O’Neil, World Institute on Disability, May 2007
48
Asset Building: The Basics
Individual Development Accounts
(IDA)
Homeownership & modification
programs
Family Self-Sufficiency (FSS) program
Plan for Achieving Self-Support
(PASS)
Special needs trusts
Tax credits & deductions
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Individual Development Accounts (IDA)
What are IDAs?
Matched savings accounts
Save for education, homeownership, or starting
their own business
Accountholders typically receive financially
education and counseling
Who qualifies for an IDA?
Earned income
200% of poverty level
Other requirements (vary by program)
IDA Overview
Megan O’Neil, World Institute on Disability
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Plan for Achieving Self-Support (PASS)
Purpose:
– Assist SSI recipients in obtaining items, services, or skills for
employment needs
Requirements:
–
–
–
–
Written plan
Vocational goal
Reasonable time frame for meeting a vocational goal
Explanation of the necessary expenses
Advantages:
– Work and receive SSI
– Save and build assets for employment goals
Megan O’Neil, World Institute on Disability, May 2007
Introduction to PASS/Cornell University
51
PASS Plan Resources
PASS plans
– Rural Institute – provides downloadable forms
and examples
http://www.passplan.org/
– Social Security Online PASS plan info
http://www.ssa.gov/pubs/11017.html
– Cornell University Employment and Disability
Institute PASS info including a tutorial
http://www.passonline.org/
Megan O’Neil, World Institute on Disability, May 2007
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Relevant Resources
www.wid.org
www.cfed.org
www.idanetwork.org
http://gwbweb.wustl.edu/csd
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AGENDA
Introduction
Creating a Vision
Creating Supports
Funding Sources
Asset
Development
Whole L.I.V.E.S.
Microsite
54
Whole L.I.V.E.S. Microsite
Homepage
Funding Sources
55
Web Links Found In This Presentation
Section 8 Made Simple: http://tacinc.org/HH/Program_Policy/Section8HCVP.htm
Housing Choice Voucher Fact Sheet: http://www.hud.gov/offices/pih/programs/hcv/about/fact_sheet.cfm
Homeownership Vouchers http://www.hud.gov/offices/pih/programs/hcv/homeownership/index.cfm
Understanding Medicaid Home and Community Services: A Primer
http://aspe.hhs.gov/daltcp/reports/primer.htm
State specific Medicaid income and asset limits
http://www.govbenefits.gov/govbenefits_en.portal?_nfpb=true&_pageLabel=gbcc_page_quicksearch&_nfls=false&
mode=results&category=MED
SSI Homepage http://www.ssa.gov/ssi/
Social Security office locator https://secure.ssa.gov/apps6z/FOLO/fo001.jsp
Benefits eligibility screening tool http://connections.govbenefits.gov/ssa_en.portal
What you need to know about SSDI http://www.ssa.gov/pubs/10153.html#2
IDA Overview http://www.workworld.org/wwwebhelp/individual_development_account_ida_overview.htm
Customized Emplymnet knowledge bank
http://www.beachcenter.org/wisdom_based_action/customized_employment/default.aspx
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