Family Caregivers of Adults With Intellectual and Developmental Disabilities: Outcomes Associated With U.S. Services and Supports

2014 ◽  
Vol 52 (2) ◽  
pp. 147-159 ◽  
Author(s):  
Heather J. Williamson ◽  
Elizabeth A. Perkins
Keyword(s):  
Developmental Disabilities ◽  
Family Caregivers ◽  
Service System ◽  
Care Delivery ◽  
Intellectual And Developmental Disabilities ◽  
Physical Health Outcomes ◽  
Services And Supports ◽  
Caregiving Roles ◽  
Mental And Physical Health ◽  
The U.S

Abstract Individuals with intellectual and developmental disabilities (IDD) in the U.S. predominantly live with their family caregivers. As care delivery and support systems vary widely globally, consideration of caregiver outcomes specifically in the U.S. context is needed. A systematic literature review was conducted to identify U.S. family caregiver outcomes and their association with existing services and supports for family caregivers of adults with IDD. Twenty-four articles were compiled using the PubMed, Web of Knowledge, PsychInfo, and CINAHL databases. Studies report economic, mental, and physical health outcomes from caregiving roles. The need for comprehensive caregiver assessment is discussed. Understanding and responding to the changing needs of family caregivers is vital to the U.S. disability service system to effectively prioritize formal resources and services.

Families of Individuals With Intellectual and Developmental Disabilities: Policy, Funding, Services, and Experiences

2013 ◽  
Vol 51 (5) ◽  
pp. 349-359 ◽  
Author(s):  
Amy Hewitt ◽  
John Agosta ◽  
Tamar Heller ◽  
Ann Cameron Williams ◽  
Jennifer Reinke
Keyword(s):  
Developmental Disabilities ◽  
Research Priorities ◽  
Future Research ◽  
Intellectual And Developmental Disabilities ◽  
Policy Makers ◽  
Home Support ◽  
The Status ◽  
Services And Supports ◽  
At Home

Abstract Families are critical in the provision of lifelong support to individuals with intellectual and developmental disabilities (IDD). Today, more people with IDD receive long-term services and supports while living with their families. Thus, it is important that researchers, practitioners, and policy makers understand how to best support families who provide at-home support to children and adults with IDD. This article summarizes (a) the status of research regarding the support of families who provide support at home to individuals with IDD, (b) present points of concern regarding supports for these families, and (c) associated future research priorities related to supporting families.

scholarly journals Evaluating the Availability and Quality of HIV/AIDS Services and Supports for Individuals with Intellectual and Developmental Disabilities

2019 ◽  
Vol 29 (Supp2) ◽  
pp. 435-440
Author(s):  
Andrew T. Roach ◽  
Franco Dispenza ◽  
Melissa Zeligman ◽  
Anne Stair ◽  
Breanna Kelly
Keyword(s):  
Developmental Disabilities ◽  
Community Based Participatory Research ◽  
Intellectual And Developmental Disabilities ◽  
Persons With Disabilities ◽  
Three Phase ◽  
Acquired Immunodeficiency ◽  
Services And Supports ◽  
Immunodeficiency Syndrome ◽  
Hiv Aids

We used a community-based participatory research (CBPR) framework to conduct a needs assessment of the availability and quality of human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS) services for persons with intellectual and developmental disabilities (PWIDD) in the Atlanta metropolitan area. We present the findings of a three-phase research project. Findings from the research informs organizations and policymakers on how to provide persons with disabilities better access to HIV/AIDS care. Ethn Dis. 2019;29(Suppl 2):435-440; doi:10.18865/ed.29.S2.435

A Comparative Analysis of Adult Siblings' Perceptions Toward Caregiving

2015 ◽  
Vol 53 (2) ◽  
pp. 143-157 ◽  
Author(s):  
Meghan M. Burke ◽  
Thomas Fish ◽  
Kathy Lawton
Keyword(s):  
Comparative Analysis ◽  
Developmental Disabilities ◽  
Focus Groups ◽  
Service System ◽  
Intellectual And Developmental Disabilities ◽  
Adult Siblings ◽  
The Future ◽  
Brothers And Sisters

Abstract Siblings of individuals with intellectual and developmental disabilities (IDD) are likely to become caregivers for their brothers and sisters. The expectations of and experiences with caregiving, however, may be different. In this study, using focus groups, we compared the perspectives of siblings who were current caregivers (n  =  25) to siblings who anticipated being caregivers (n  =  17). Responses were compared and contrasted across four areas: caregiving responsibilities, rewards, challenges, and opinions toward being paid as a caregiver. Both caregiver groups were knowledgeable about and invested in their brothers and sisters. Also, they both reported that they enjoyed bonding with their brothers and sisters. Challenges, for current caregivers, related to understanding and navigating the service system. In contrast, anticipated caregivers were concerned about planning for the future. Mixed viewpoints were expressed about receiving pay for providing care although a greater number of current caregivers were receptive to it as a means to supporting their own families.

The State of Transportation for People With Intellectual and Developmental Disabilities in Medicaid Home and Community-Based Services 1915(c) Waivers

2016 ◽  
Vol 27 (3) ◽  
pp. 168-177 ◽  
Author(s):  
Carli Friedman ◽  
Mary C. Rizzolo
Keyword(s):  
Developmental Disabilities ◽  
Public Transportation ◽  
Independent Living ◽  
People With Disabilities ◽  
Transportation Systems ◽  
Intellectual And Developmental Disabilities ◽  
Community Based ◽  
Transportation Services ◽  
Services And Supports ◽  
Community Based Services

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.

scholarly journals Caregiving in the U.S. 2020: What Does the Latest Edition of This Survey Tell Us About Their Contributions and Needs?

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 681-681
Author(s):  
Gabriela Prudencio ◽  
Heather Young
Keyword(s):  
Family Caregivers ◽  
Family Caregiving ◽  
Well Being ◽  
Basic Unit ◽  
Trend Data ◽  
Nationally Representative ◽  
Services And Supports ◽  
The Individual ◽  
National Profile ◽  
The U.S

Abstract Family and friends comprise the most basic unit of any society. For individuals who take on the responsibility of caring for another person through sickness or disability, it can often be challenging to see beyond the individual experience. Yet in the aggregate, family caregivers—whether they be families of kin or families of choice—are woven into the fabric of America’s health, social, economic, and long-term services and supports (LTSS) systems. As the country continues to age, the need to support caregivers as the cornerstone of society will only become more important. A national profile of family caregivers first emerged from the 1997 Caregiving in the U.S. study. Related studies were conducted in 2004, 2009, and 2015 by the NAC in collaboration with AARP. Caregiving in the U.S. 2020 presents a portrait of unpaid family caregivers today. A nationally representative survey (n=1,499), it replicates the methodology used in 2015. Therefore, during this symposium, AARP and NAC will present trend data from 2015 in comparison to 2020, and explore key subgroup differences. The presentation will cover prevalence, demographic characteristics, intensity and duration of care, the well-being of caregivers, the financial impact of family caregiving on caregivers themselves, and the degree to which technology supports caregivers today.

Building an Evidence-Based, Holistic Approach to Advancing Integrated Employment

2018 ◽  
Vol 43 (3) ◽  
pp. 207-218 ◽  
Author(s):  
Allison Cohen Hall ◽  
John Butterworth ◽  
Jean Winsor ◽  
John Kramer ◽  
Kelly Nye-Lengerman ◽  
...  
Keyword(s):  
Developmental Disabilities ◽  
Supported Employment ◽  
Holistic Approach ◽  
Intellectual And Developmental Disabilities ◽  
Self Employment ◽  
Integrated Employment ◽  
Policy And Strategy ◽  
Employment Supports ◽  
Substantial Investment ◽  
Services And Supports

Since the introduction of supported employment in the Developmental Disabilities Act of 1984 and the Rehabilitation Act Amendments of 1986, there has been continued development and refinement of best practices in employment services and supports. Progress includes creative outcomes for individuals with significant support needs including customized jobs and self-employment, community rehabilitation providers that have shifted emphasis to integrated employment, and states that have made a substantial investment in Employment First policy and strategy. Despite these achievements, the promise of integrated employment remains elusive for the majority of individuals with intellectual and developmental disabilities. The number of individuals supported in integrated employment by state agencies has remained stagnant for the past 15 years, participation in nonwork services has grown rapidly, and individual employment supports have not been implemented with fidelity. This article presents preliminary findings from activities completed by the Rehabilitation Research and Training Center on Advancing Employment for Individuals with Intellectual and Developmental Disabilities and discusses a framework for organizing state and federal investments in research, practice, and systems change.

Supporting Inclusion and Flourishing in the Religious and Spiritual Lives of People With Intellectual and Developmental Disabilities

Inclusion ◽  
2013 ◽  
Vol 1 (1) ◽  
pp. 64-75 ◽  
Author(s):  
Erik W. Carter
Keyword(s):  
Developmental Disabilities ◽  
Research Policy ◽  
People With Disabilities ◽  
Service Systems ◽  
Intellectual And Developmental Disabilities ◽  
Religion And Spirituality ◽  
Culturally Competent ◽  
Religious Activities ◽  
Policy And Practice ◽  
Services And Supports

Abstract An important aspect of supporting many people with intellectual and developmental disabilities to flourish involves providing meaningful opportunities to participate in the spiritual and religious life of their community. Yet, a review of prevailing practices suggests the spirituality and faith community connections of individuals with intellectual disability, autism, and other developmental disabilities may be inconsistently supported or entirely overlooked. This article suggests an initial framework for research, policy, and practice aimed at fostering inclusion at the intersection of disability, religion, and spirituality. Recommendations are offered for designing services and supports that ensure that (a) people with disabilities can participate fully in inclusive spiritual and religious activities, (b) congregations develop the commitment and capacity to welcome people with disabilities and their families, (c) families receive support in ways that honor their faith commitments and connections, and (d) service systems support people with disabilities and their families in comprehensive and culturally competent ways.

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

2016 ◽  
Vol 41 (4) ◽  
pp. 244-255 ◽  
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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