Rural-Urban Disparities in Access to Home- and Community-Based Services and Supports: Stakeholder Perspectives From 14 States

Transportation is the most frequently reported problem for people with disabilities. While some people with disabilities have difficulty with limited or no public transportation systems, others have trouble with inaccessible infrastructures and systems. In addition, people with intellectual and developmental disabilities (IDD) often have trouble with many of the skills that navigating transportation requires. Although accessible transportation is crucial for independent living, Medicaid only requires states cover nonemergency medical transportation and does not require transportation related to other aspects necessary for community living such as accessing work, errands, or recreational activities. The purpose of this article is to examine Medicaid Home and Community-Based Services (HCBS) 1915(c) waivers, the largest provider of long-term services and supports for people with IDD, to see how transportation is provided for people with IDD. Our examination of 99 waivers for FY 2013 revealed 58 waivers provided transportation-specific services and 71 waivers provided transportation within another service. The majority of waivers provided transportation for people with IDD through these two means; however, this transportation was often limited to very specific purposes. From our findings, it appears transportation services for people with IDD in waivers need to be expanded to support community access and integration.

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Promises and Pitfalls of Health Information Technology for Home- and Community-Based Services

Journal of Applied Gerontology ◽

10.1177/0733464820941364 ◽

2020 ◽

pp. 073346482094136

Author(s):

Sangeeta C. Ahluwalia ◽

Esther Friedman ◽

Daniel Siconolfi ◽

Debra Saliba ◽

Jessica Phillips ◽

...

Keyword(s):

Information Technology ◽

Health Information Technology ◽

Health Information ◽

Service Agency ◽

Community Based ◽

Incentive Program ◽

Services And Supports ◽

Consumer Advocates ◽

Community Based Services

Background: Health information technology (HIT) use in home- and community-based services (HCBS) has been hindered by inadequate resources and incentives to support modernization. We sought to understand the ways the Medicaid Balancing Incentive Program (BIP) facilitated increased use of HIT to increase access to HCBS. Method: Qualitative analysis of interviews with 30 Medicaid administrators, service agency providers, and consumer advocates. Results: Although stakeholders perceived several benefits to greater HIT use, they highlighted critical challenges to effective adoption within the long-term services and supports (LTSS) system, including lack of extant expertise/knowledge about HIT, the limited reach of HIT among rural and disabled beneficiaries, burdensome procurement processes, and the ongoing resources required to maintain up-to-date HIT solutions. Conclusion: The structural reforms required by BIP gave states an opportunity to modernize their HCBS systems through use of HIT. However, barriers to HIT adoption persist, underscoring the need for continued support as part of future rebalancing efforts.

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Day Habilitation Services for People With Intellectual and Developmental Disabilities in Medicaid Home and Community-Based Services Waivers

Research and Practice for Persons with Severe Disabilities ◽

10.1177/1540796916664337 ◽

2016 ◽

Vol 41 (4) ◽

pp. 244-255 ◽

Cited By ~ 5

Author(s):

Carli Friedman

Keyword(s):

Developmental Disabilities ◽

Service Utilization ◽

Fiscal Year ◽

Intellectual And Developmental Disabilities ◽

Community Based ◽

Total Spending ◽

Day Habilitation ◽

Services And Supports ◽

Community Based Services

Medicaid Home and Community-Based Services (HCBS) 1915(c) waivers are one of the largest providers of long-term services and supports for people with intellectual and developmental disabilities (IDD). HCBS waivers also play a prominent role in providing day habilitation services for people with IDD. The purpose of this study was to examine how HCBS waivers allocate day habilitation services for people with IDD. HCBS waivers providing day habilitation services for people with IDD were analyzed to determine service utilization and projected expenditures. In fiscal year 2014, HCBS waivers projected US$5.62 billion of funding for day habilitation services; however, there was wide variance across services in terms of projected total spending, spending per participant, and reimbursement rates.

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Factors Explaining State Differences in Applying for a Recent Long-Term Care Program that Promotes Aging in Place: Perspectives of Medicaid Administrators

Journal of Applied Gerontology ◽

10.1177/0733464820924510 ◽

2020 ◽

pp. 073346482092451

Author(s):

Esther M. Friedman ◽

Regina A. Shih ◽

Sangeeta C. Ahluwalia ◽

Virginia I. Kotzias ◽

Jessica L. Phillips ◽

...

Keyword(s):

Long Term Care ◽

Aging In Place ◽

Care Program ◽

Community Based ◽

Term Care ◽

Incentive Program ◽

Policy Goals ◽

Services And Supports ◽

Community Based Services

Older adults in need of assistance often prefer to remain at home rather than receive care in an institution. To meet these preferences, Medicaid invited states to apply for the Balancing Incentive Program (BIP), a program intended to “rebalance” Medicaid-financed long-term services and supports to Home- and Community-Based Services (HCBS). However, only about half of eligible states applied. We interviewed Medicaid administrators to explore why some states applied for BIP whereas others did not. Supportive state leadership and the presence of other programs supporting community-based care were positively related to BIP application. Opposing policy priorities and programs competing for similar resources were negatively related to BIP application. Because states most likely to apply already had policy goals and programs supporting HCBS, BIP may inadvertently widen disparities across states, pushing those on the margins ahead and leaving the ones that are worst off in HCBS support to fall even further behind.

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A National Analysis of Medicaid Home and Community Based Services Waivers for People With Intellectual and Developmental Disabilities: FY 2015

Intellectual and Developmental Disabilities ◽

10.1352/1934-9556-55.5.281 ◽

2017 ◽

Vol 55 (5) ◽

pp. 281-302 ◽

Cited By ~ 17

Author(s):

Carli Friedman

Keyword(s):

Developmental Disabilities ◽

National Level ◽

Intellectual And Developmental Disabilities ◽

Community Based ◽

Day Habilitation ◽

Services And Supports ◽

National Analysis ◽

Regulation Changes ◽

Community Based Services

Abstract Medicaid Home and Community Based Services (HCBS) 1915(c) waivers are the largest source of funding for the long term services and supports of people with intellectual and developmental disabilities (IDD). National-level analyses of HCBS IDD waivers are crucial because of the large variance across states, the recent CMS rule and regulation changes (CMS 2249-F/2296-F), and the ever changing economic and political landscape. Therefore, the aim of this study was to examine state waiver priorities for people with IDD. In FY 2015, 111 waivers projected spending $25.6 billion for approximately 630,000 people with IDD. The services with the most funding were residential habilitation, supports to live in one's own home, and day habilitation. However, our analysis revealed large discrepancies across states and services.

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Serving Rural Veterans with Disabilities: A National Survey of Centers for Independent Living

Journal of Community Health ◽

10.1007/s10900-020-00941-6 ◽

2020 ◽

Author(s):

Jennifer Hale-Gallardo ◽

Consuelo M. Kreider ◽

Yuxin Ni ◽

Luz M. Semeah ◽

Zaccheus J. Ahonle ◽

...

Keyword(s):

Rural Communities ◽

Independent Living ◽

Univariate Analysis ◽

The United States ◽

Community Based ◽

National Examination ◽

Catchment Areas ◽

The Status ◽

Services And Supports ◽

Community Based Services

Abstract This study comprises a systematic national examination of how Centers for Independent Living can and do support Veteran consumers, especially those living in rural communities. This research provides contextualized understanding of rural Veteran needs for community-based services and resources available through Centers for Independent Living. A survey was administered to the leadership of 383 Centers for Independent Living throughout the United States, the majority of which have rural catchment areas and serve rural Veterans through both main and satellite offices. Descriptive univariate analysis was used to describe responses. Study respondents represented a total of 39 states, with 20% of respondents reporting that their consumers were 100% rural and only 3% entirely urban. Services and supports from Centers for Independent Living provided to rural Veterans most frequently included housing, transportation, and peer support. Approximately half of all Centers for Independent Living reported tracking the status of their Veteran consumers.

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Stakeholders’ Home and Community Based Services Settings Rule Knowledge

Research and Practice for Persons with Severe Disabilities ◽

10.1177/1540796917743210 ◽

2017 ◽

Vol 43 (1) ◽

pp. 54-61

Author(s):

Carli Friedman

Keyword(s):

Community Integration ◽

People With Disabilities ◽

Medicaid Program ◽

Community Based ◽

Transition Plans ◽

Rule Knowledge ◽

Key Stakeholders ◽

Services And Supports ◽

Community Based Services

Medicaid Home and Community Based Services (HCBS) waiver programs provide the majority of long-term services and supports for people with intellectual and developmental disabilities (IDD). Relatively new (2014) HCBS rules (CMS 2249-F/2296-F) governing these programs require meaningful community integration of people with disabilities who receive services under this Medicaid program. States are required to develop and submit transition plans, which document how their programs will meet the so-called settings rules. Public comment periods provide advocates the opportunity to impact states’ rules by ensuring that plans are truly community based. Yet the lengthy and technical description of the rules may be inaccessible for people with disabilities and their allies. Because knowledge of the HCBS settings rules can be crucial for people with IDD to enable them to access their rights, the aim of this study was to explore HCBS settings rules knowledge of people with IDD and key stakeholders. Our findings confirmed that there is a need to make the HCBS settings rules more accessible to those most affected by the changes—people with IDD and family members of people with IDD. Doing so is a necessary first step to promote advocacy regarding its implementation.

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Basaglia after Basaglia

Basaglia's International Legacy: From Asylum to Community ◽

10.1093/med/9780198841012.003.0003 ◽

2020 ◽

pp. 43-68

Author(s):

Roberto Mezzina

Keyword(s):

Point Of View ◽

Social Dimension ◽

Community Based ◽

Citizenship Rights ◽

Persons With Disabilities ◽

Recovery Movement ◽

The Social ◽

Services And Supports ◽

Community Based Services

Basaglia anticipated, more than 50 years ago, the paradigm shift from ‘illness’ to the ‘person’—a shift that the recovery movement proposes today, both from a theoretical and a practical point of view. Mental illness can be seen as an artefact, shaped by the institution, and can be defined as a double that conceals human experience. Deinstitutionalization is underlined as the main strategy to overturn the oppression of people with psychosocial disabilities in the asylum and beyond, to mobilize resources for their recovery and social integration, as well as to create services and supports in the community. The passage from needs to citizenship rights, the social dimension of recovery, and the issue of empowerment are mediated by the role of community-based services. The experience of Trieste, begun in 1971, can be seen as the ‘practically true’ invoked by Franco Basaglia. The legislation of 1978 was based on the recognition of human rights as conformed today by the Convention on the Rights of Persons with Disabilities (CRPD).

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Community-Based Services for People With Brain Injury: A National Analysis

Rehabilitation Research Policy and Education ◽

10.1891/2168-6653.32.2.123 ◽

2018 ◽

Vol 32 (2) ◽

pp. 123-138 ◽

Cited By ~ 3

Author(s):

Carli Friedman ◽

Laura VanPuymbrouck

Keyword(s):

Brain Injury ◽

Underserved Populations ◽

Fiscal Year ◽

Community Based ◽

Institutional Settings ◽

Services And Supports ◽

National Analysis ◽

Community Based Services

Purpose:Where and how rehabilitation and long-term services and supports (LTSS) occur for individuals with brain injury (BI) has shifted dramatically over the last few decades. Medicaid Home and Community Based Services (HCBS) 1915(c) waivers allow states to offer LTSS that is tailored to the needs of underserved populations in the community rather than institutional settings.Method:This study examined how states utilized waivers to provide for people with BI.Results:Findings revealed only 15 states had waivers for people with BI in fiscal year 2016.Conclusions:Of those waivers for people with BI, there were vast differences across states and services.

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