Mark Sciegaj

Access to Specialty Medical Care for Children With Mental Retardation, Autism, and Other Special Health Care Needs

Access to specialty medical care among children with mental retardation, autism, or other types of special health care needs was examined. Results from a national survey indicate that over a third of the children with autism, over a fifth with mental retardation, and over a fifth with other types of special health care needs had problems obtaining needed care from specialty doctors in the preceding year. The most common problems included getting referrals and finding providers with appropriate training. Children with unstable health conditions, autism, or those whose parent was in poor health were at greater risk for problems. Primary Medicaid coverage and public secondary health coverage were associated with fewer access problems. Implications for health services for children with special health care needs are discussed.

An Inventory of Publicly Funded Participant-Directed Long-Term Services and Supports Programs in the United States.

After a decade of changes in federal law, regulation, and policy designed to promote the growth of publicly funded participant-directed long-term services and supports (PD-LTSS) programs, the number of these programs has grown considerably. The National Resource Center for Participant-Directed Services (NRCPDS) at Boston College started developing an inventory of these programs in 2010–2011 to determine the number and characteristics of publicly funded PD-LTSS programs in the United States. The 2010–2011 NRCPDS inventory provides baseline data for future research efforts in gauging the growth and expansion of this service delivery model. This article details the process for developing this data resource, describes some of the major characteristics of PD-LTSS programs in the United States, and discusses possible implications and areas for future research.

State Experiences with Implementing the Cash and Counseling Demonstration and Evaluation Project

ABSTRACT The Cash and Counseling Demonstration and Evaluation (CCDE) tested one of the most autonomous forms of consumer direction for personal assistance services. In the winter of 1996/97, Arkansas, Florida, New Jersey, and New York each received grants to develop and implement CCDE. While Arkansas, Florida, and New Jersey were successful in their efforts of implementing CCDE, New York was unable to do so. Using elements of Hasenfeld and Brocks (1991) political economy policy implementation model, the following sections describe two primary interactions between key policy implementation instruments and internal and external stakeholders that made New Yorks participation in CCDE not possible. This case study also provides some lessons for other states interested in developing Cash and Counseling models.

Lessons for the United States from countries adapting to the consequences of aging populations

The aging of the global population is unrivaled in human history. As a result of this demographic transition, developed and developing nations are facing new challenges regarding provision of health and long-term care, economic security programs, and changing informal support structures for elders. This paper is based on a review of the relevant research and policy literature. The paper reports on trends in nine countries that are responding to the consequences of an aging population and presents major lessons for policy makers in the United States.

A framework for applying ethical theory to public health practice.

Like most other public health agencies, the Georgia Department of Human Resources, Division of Public Health (DPH) has encountered a growing number of questions and conflicts with ethical implications. To address these and other questions, DPH started to develop a framework, in January 1985, specifically related to solving problems, setting priorities, and developing policy that adds an ethical perspective. DPH must deal with issues and conflicts that transcend the traditional model of medical care: with the new economic reality, programs must continue with less resources; medical technology is now raising questions, but not necesarily answers, related to life and death; and the rights and responsibilities of individuals and institutions are not clearly defined. In this context, DPH has started to examine ethical considerations with respect to the individual and the community. An interface exists between ethical theory and health care. Over the years, however, this relationship has assumed different manifestations, ranging from the formation of precise conduct codes for health care professionals to the establishment of review boards that examine specific morally questionable procedures. DPHs purpose in applying ethical theory to its health care practices is not to develop an inflexible code nor a committee to review isolated cases of moral conflict. The purpose is to use ethical theory as a form of vision for the remainder of the 1980s and beyond.

Where are they now? Cash and Counseling successes and challenges over time.

The positive results of the Cash and Counseling Demonstration and Evaluation (CCDE) led to the funding of a replication project that included 12 more states in 2008. Since then, the political and economic environments have changed. The authors sought to investigate how well the 3 original and 12 replication CCDE programs are coping with current challenges and how their experiences may inform the growth and sustainability of emerging participant-directed programs. Semistructured telephone interviews were conducted with the 15 Cash and Counseling state program administrators. Key topics addressed included successful aspects of state programs, biggest challenges for each program, and information program administrators would like to learn from state colleagues. Themes related to budget issues (e.g., staff shortages and program funding cuts) and non–budget-related issues (e.g., understanding of program operations) emerged from the interviews. State program administrators also discussed program successes. To promote the sustainability and growth of participant-directed programs, existing participant-directed programs should be tied to national policy trends as well as review whether or not the programs address participant-directed principles. The development of new participant-directed programs should be based on other states’ experiences as discussed in this article.

Short- and Intermediate-Term Trends Affecting Medicaid Policy for Persons with Disability, Chronic Illness, and Special Needs:

Medicaid is a critically important program for accessing health and supportive services for persons with disabilities, chronic illness, and special needs. Because of its size and scope, Medicaid is the leading payer and policy-making entity for this population. Addressing both the complex needs of these individuals and their preference to remain in their communities has led to the expansion of Medicaid beyond its original medical model to one in which it pays for a wider range of services. This article describes three trends affecting the Medicaid program: the continued growth in noninstitutional care alternatives, private financing options for long-term care for older persons with a disability, and the expansion of cash benefit options to more consumer-directed care-delivery models. For each trend, the article also describes a range of policy responses.

The times they are a-changing: Self-directed long-term services and supports and gerontological social work

ABSTRACT The Partnerships for Person-Centered (PC) and Participant-Directed (PD) Long-Term Services and Supports (LTSS) Project (Partnerships Project) was a three-year effort funded by the New York Community Trust to develop and implement social work curriculum that would better prepare students for the changing practice demands of the aging and disability services network for self-directed LTSS (SD-LTSS). This article first describes the growth of SD-LTSS and the need for trained social workers on this service delivery model. The paper then describes the Partnerships Project that involved schools of social work along and aging and disability network organization partners in nine states. This description includes the major activities of the project including the creation of SD-LTSS competencies for social work education, the infusion of these competencies in beginning and advanced social work classes, and student assessment of their attainment of these competencies. This article then discusses the challenges to institutionalizing such curricular changes within social work programs and the need for a national strategy to train social workers for the demands of SD-LTSS.

Preparing Social Workers With Person-Centered and Participant-Directed Services for the Changing Aging and Disability Network

A competency-based approach in social work curriculum, guided by the 2008 Educational and Policy Statement (EPAS), is now expected of all BSW and MSW programs. Additionally, to ensure the preparation of social workers with geriatric competencies, the Council on Social Work Education (CSWE) National Center for Gerontological Social Work Education (Gero-Ed Center) and the New York Academy of Medicine Social Work Leadership Institute developed and implemented the Geriatric Social Work Competencies Rating Scale of 50 competencies and related these to the EPAS required competencies (CSWE, 2010). Within this context of increased emphasis on competency-based education, the authors, who represent a partnership of the CSWE Gero-Ed Center and the National Resource Center for Participant-Directed Services (NRCPDS), contend that social workers also need to acquire competencies to implement person-centered (PC) and participant-directed (PD) care within long-term services and supports (LTSS)