Creating Whole Lives and Accessing Resources in Ways that Promote Inclusive, Self-Determined Lives

1. 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

2. Whole L.I.V.E.S: Life of Inclusion, Valued relationships, Economic control, and Self-determination.

3. AGENDA • Introduction • Creating a Vision • Creating Supports • Funding Sources • Asset Development • Whole L.I.V.E.S. Microsite

4. 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

5. 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?

6. 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.

7. What is Your Vision for the Future?

8. 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

9. Customized Employment Knowledge Bank http://www.beachcenter.org/wisdom_based_action/customized_employment/default.aspx

10. 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/cgi-win/TypeQuery.exe?902

11. 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

12. Job Possibilities Wants to be on the go Loves to eat Is VERY social Likes uniforms Is a morning person Likes variety Is Independent Enjoys physical activity

13. Job Possibilities 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?

14. 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

15. 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

16. Personal Assistant Activity List important personal assistant qualities, skills, experience. • Nonnegotiable • Negotiable

17. 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

18. 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.

19. Section 8 Program Housing Assistance Types • Project-based rental assistance • Tenant-based rental assistance • Homeownership assistance Section 8 Made Simple

20. 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

21. 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

22. AGENDA • Introduction • Creating a Vision • Creating Supports • Home • Employment • Community Inclusion • Funding Sources • Asset Development • Whole L.I.V.E.S. Microsite

23. 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?

24. Natural Ties • Pairs university organizations with people with disabilities • Provides stable relationships • Offers individual and group activities http://www.youtube.com/watch?v=3lxCkQUZYkk

25. 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

26. What is Medicaid? • Medicaid is a federal entitlement program designed to help states meet health-care costs for low-income and medically needy populations.

27. 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

28. Medicaid Medicaid has two broad sectors • health care • long-term services

29. 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

30. 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

31. 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

32. Services Available Under HCBS • Case management • Behavioral support • Therapies (e.g., physical, occupational, speech) • Home heath aide • Personal care • Respite • Transportation • Habilitation • Residential • Day • Day supports • Vehicle adaptation • Specialized medical equipment and services • Psychosocial rehabilitation • Clinic services • Live-in caregiver • Expanded habilitation • Prevocational and supported employment • Education

33. 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 What is Participant Direction of HCBS Waiver Funds?

34. 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

35. 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)

36. 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.

37. Microboard Resources • Vela http://www.microboard.org/ • Tennessee Microboards Association http://www.tnmicroboards.org./ • Microboard Development Workbook http://www.ihd.umkc.edu/Resources/Microboard%20Workbook.pdf • Establishing a Microboard http://www.cdhs.state.co.us/ddd/PDFs/DIR_Microboard_Manual.pdf

38. 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

39. 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/

40. 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

41. 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 2008 SSI Asset / Income Limits

42. Additional SSI Resources • Social Security office locator • SSI booklet • Understanding Supplemental Security Income

43. 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)

44. 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 self-employed persons. What you need to know about SSDI

45. 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

46. 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

47. AGENDA • Introduction • Creating a Vision • Creating Supports • Funding Sources • Asset Development • Housing • Secured credit cards • PASS plan (plan for achieving self-sufficiency) • Whole L.I.V.E.S. Microsite

48. 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 well-being Megan O’Neil, World Institute on Disability, May 2007

49. 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

50. 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