Restricted accessResearch articleFirst published online 2017
“Get us real jobs:” Supported employment services for people with intellectual and developmental disabilities in Medicaid Home and Community Based Services Waivers
BACKGROUND: Despite their interest in and ability to work in integrated settings the majority of adults with intellectual and developmental disabilities (IDD) in the United States are funneled into segregated settings.
OBJECTIVE: Because of the essential role Medicaid 1915(c) Home and Community Based Services (HCBS) waivers play in providing both long-term supports and supported employment services the aim of this study was to examine how HCBS waivers allocated supported employment services in fiscal year 2014. This included an examination of hourly reimbursement rates and annual service prevision per participant as well as variance across states.
METHODS: Supported employment services in Medicaid 1915(c) HCBS waivers for people with IDD were analyzed to determine trends, service utilization, and projected expenditures.
RESULTS: Although HCBS waivers play a critical role in providing supported employment services for people with IDD, we found wide variability across services and states in terms of projected total spending, projected spending per participant, and service rates.
CONCLUSIONS: Expansion of supported employment services is important so people with disabilities can access employment in the most integrated settings possible in alignment with the Americans with Disabilities Act and the Olmstead v L.C. decision.
Americans With Disabilities Act of 1990, Pub. L. No. 101-336, 104 Stat. 328 (1990).
2.
BagenstosS. R. (2015). The disability cliff. Democracy, 35, 55–67.
3.
BarnesC. (1997). Disability studies: Past, present and future. Leeds: The Disability Press.
4.
BraddockD., HempR., RizzoloM. C., TanisE. S., HafferL., & WuJ. (2015), The state of the states in intellectual and developmental disabilities: Emerging from the great recession (10th ed.). Washington, DC: The American Association on Intellectual and Developmental Disabilities.
5.
BrickeyM., BrowningL., & CampbellK. (1982). Vocational histories of sheltered workshop employees placed in projects with industry and competitive jobs. Mental Retardation, 20(2), 52–57.
6.
ButterworthJ., HallA., HoffD., & MiglioreA. (2007). State and international efforts to reform or eliminate the use of sub-minimum wage for persons with disabilities. University of Massachusetts Boston: Institute for Community Inclusion. Retrieved from http://www.vadrs.org/essp/downloads/WIReport011207.doc
7.
CaldwellK., ParkerHarris, S., & RenkoM. (2012). The potential of social entrepreneurship: Conceptual tools for applying theory to policy and practice. Intellectual and Developmental Disabilities, 50(6), 505–518. http://dx.doi.org/10.1352/1934-9556-50.06.505
8.
Centers for Medicare and Medicaid Services (2011, September 16). CMCS informational bulletin: Updates to the §1915 (c) waiver instructions and technical guide regarding employment and employment related services. Baltimore, Maryland: Department of Health and Human Services. Retrieved from http://www.medicaid.gov/federal-policy-guidance/downloads/CIB-09-16-2011.pdf
9.
CharltonJ. (1998), Nothing about us without us: Disability oppression and empowerment. Berkeley: University of California Press.
10.
Disabled and Elderly Health Programs Group, Center for Medicaid and State Operations, Centers for Medicare and Medicaid Services, & Department of Health and Human Services (2015, January). Application for a §1915(c) Home and Community-Based Waiver [Version 3.5]: Instructions, technical guide, and review criteria. Retrieved from http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/Downloads/Technical-Guidance.pdf
11.
EikenS. (2011). Revisiting the Name Game: A taxonomy of home and community-based services. Paper presented at the National Home and Community-Based Services Conference, Washington, DC.
12.
ElkM. (2013). Top democrats differ on ending subminimum wage for workers with disabilities. In These Times. Retrieved from http://inthesetimes.com/working/entry/14697/top_democrats_differ_on_ending_subminimum_wage_for_workers_disabilities/
13.
ErevellesN. (2001). In search of the disabled subject. In
WilsonJ. C. & Lewiecki-WilsonC. (Eds.), Embodied rhetorics: Disability in language and culture (pp. 92–111). Carbondale: Southern Illinois University.
14.
FleischerD. Z., & ZamesF. (2001). Groundbreaking disability rights legislation: Section 504The disability rights movement: From charity to confrontation (pp. 287). Philadelphia: Temple University Press.
15.
FriedmanC. (2016). Day habilitation services in Medicaid Home and Community Based Services waivers. Research and Practice for Persons with Severe Disabilities. Online first, 1–12. http://dx.doi.org/10.1177/1540796916664337
16.
FriedmanC., &
RizzoloM. C. (2014a). 99 Waivers: An analysis of state-by-state HCBS Waivers for persons with intellectual disabilities, Chicago: University of Illinois at Chicago.
17.
FriedmanC., & RizzoloM. C. (2014b). Research brief: Services that support families in Medicaid HCBS waivers in fiscal year 2013, Boulder and Chicago: University of Colorado and University of Illinois at Chicago.
18.
FriedmanC., & RizzoloM. C. (2015). 2014: An analysis of state-by-state HCBS Waivers for persons with intellectual disabilities. Chicago: University of Illinois at Chicago.
19.
FriedmanC., &
RizzoloM. C.(in press). The state of transportation for people with intellectual and developmental disabilities in Medicaid Home and Community Based Services 1915(c) waivers. Journal of Disability Policy Studies.
20.
FriedmanC., & RizzoloM. C. (2016). Un/Paid labor: Medicaid Home and Community Based Services waivers that pay family as personal care providers. Intellectual and Developmental Disabilities, 54(4), 233–244. http://dx.doi.org/10.1352/1934-9556-54.4.233
21.
FriedmanC., &
RizzoloM. C.(under review). Electronic video monitoring in Medicaid Home and Community Based Services waivers for people with intellectual and developmental disabilities.
22.
FriedmanC., LulinskiA., & RizzoloM. C. (2015). Mental/behavioral health services: Medicaid Home and Community Based Services 1915(c) waiver allocation for people with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 53(4), 257–270. http://dx.doi.org/10.1352/1934-9556-53.4.257
23.
FriedmanC., RizzoloM. C., & SchindlerA. (2014). Dental services: A nationwide study of Medicaid Home and Community-Based Services (HCBS) waiver service allocation. Inclusion, 2(1), 17–36. http://dx.doi.org/10.1352/2326-6988-2.1.17
24.
FriedmanC., &
SpassianiN. A.(in press). Getting out there: Community support services for people with intellectual and developmental disabilities in Medicaid Home and Community Based Services waivers. Inclusion.
25.
GoodleyD. (2011), Disability studies: An interdisciplinary introduction. London: Sage.
JahodaA., KempJ., RiddellS., & BanksP. (2008). Feelings about work: A review of the socio-emotional impact of supported employment on people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 21(1), 1–18.
28.
KilsbyM., & BeyerS. (1996). Engagement and interaction: A comparison between supported employment and day service provision. Journal of Intellectual Disability Research, 40(4), 348–357.
29.
LewisA. (2011). Open letter to employers holding special wage certificates. Baltimore: National Disability Leadership Alliance. Retrieved March 9, 2013 from http://betterbethesdalutheran.com/files/2013/05/NDLA_Letter_to_Employers_of_PWD.pdf
30.
MaurerM. (2011). The Fair Wages for Workers with Disabilities Act of 2011H.R. 3086. Retrieved March 9, 2013, from https://nfb.org/images/nfb/documents/pdf/fair-wagesforworkers-2012.pdf
31.
MiglioreA., MankD., GrossiT., & RoganP. (2007). Integrated employment or sheltered workshops: Preferences of adults with intellectual disabilities, their families, and staff. Journal of Vocational Rehabilitation, 26(5), 5–19.
32.
National Disability Rights Network (2011). Segregated and exploited: The failure of the disability system to provide quality work (pp. 1–60). Washington, D.C.: National Disability Rights Network.
33.
NovakJ. (2015). Raising Expectations for US Youth with Disabilities: Federal Disability Policy Advances Integrated Employment. Center for Educational Policy Studies Journal, 5(1), 91–110.
34.
NazarovZ. E., GoldenT. P., & SchraderS. V. (2012). Prevocational services and supported employment wages. Journal of Vocational Rehabilitation, 37(2), 119–.
35.
Office of Disability Employment Policy (2013). Disability employment policy resources by topic. Retrieved September 6, 2013, from http://www.dol.gov/odep/
36.
Olmstead v. LC, No. 98-536, 527 581 (Supreme Court 1999).
37.
ParkerHarris, S., CaldwellK., & RenkoM. (2014). Entrepreneurship by any other name: Self-sufficiency versus innovation. Journal of Social Work in Disability & Rehabilitation, 13(4), 317–349. http://dx.doi.org/10.1080/1536710X.2014.961115
38.
Parker HarrisS., RenkoM., & CaldwellK. (2013). Accessing social entrepreneurship: Perspectives of people with disabilities and key stakeholders. Vocational Rehabilitation, 38(1), 35–48.
39.
Parker HarrisS., RenkoM., & CaldwellK. (2014). Social entrepreneurship as an innovative pathway to employment for people with disabilities: Exploring political-economic and socio-cultural factors. Disability & Society, 29(8), 1275–1290. http://dx.doi.org/10.1080/09687599.2014.924904
40.
RenkoM., Parker HarrisS., & CaldwellK. (2015). Entrepreneurial entry by people with disabilities. International Small Business Journal, (ahead of print). http://dx.doi.org/10.1177/0266242615579112
41.
RizzoloM. C., FriedmanC., Lulinski-NorrisA., & BraddockD. (2013). Home and community based services (HCBS) waivers: A nationwide study of the states. Intellectual and developmental disabilities, 51(1), 1–21. http://dx.doi.org/10.1352/1934-9556-51.01.001
42.
RoganP., & RinneS. (2011). National call for organizational change from sheltered to integrated employment. Intellectual and Developmental Disabilities, 49(4), 248–260. http://dx.doi.org/10.1352/1934-9556-49.4.248
43.
RussellM. (2000). The political economy of disablement. Dollars & Sense.
44.
SchusterJ. W. (1990). Sheltered workshops: Financial and philosophical liabilities. Mental Retardation, 28(4), 233–239.
45.
Self-Advocates Being Empowered (2009). SABE policy statement on employment: SABE calls for ending subminimum wage in 2012. Retrieved October 12, 2013, from http://sabeusa.org/?catid=179
46.
U.S. Department of Health and Human Services (2000). Understanding Medicaid home and community services: A primer. Washington, DC: Author.
47.
VerdugoM., Jordán de UrríesF., JenaroC., CaballoC., & CrespoM. (2006). Quality of life of workers with an intellectual disability in supported employment. Journal of Applied Research in Intellectual Disabilities, 19(4), 309–316. http://dx.doi.org/10.1111/j.1468-3148.2006.00277.x
48.
WehmanP., IngeJ., RevellG., & BrookeV. (2007). Real work for real pay: Inclusive employment for people with disabilities. Baltimore, MD: Paul H. Brookes Publishing Company.
49.
WehmanP., & MoonS. (1988), Vocational rehabilitation and supported employment. Baltimore: Paul H Brooks Publishing Co.
