Mary C. Rizzolo

Emerging Technologies and Cognitive Disability

Despite the potential of emerging technologies to assist persons with cognitive disabilities, significant practical impediments remain to be overcome in commercialization, consumer abandonment, and in the design and development of useful products. Barriers also exist in terms of the financial and organizational feasibility of specific envisioned products, and their limited potential to reach the consumer market. Innovative engineering approaches, effective needs analysis, user-centered design, and rapid evolutionary development are essential to ensure that technically feasible products meet the real needs of persons with cognitive disabilities. Efforts must be made by advocates, designers and manufacturers to promote better integration of future software and hardware systems so that forthcoming iterations of personal support technologies and assisted care systems technologies do not quickly become obsolete. They will need to operate seamlessly across multiple real-world environments in the home, school, community, and workplace.

Home and Community Based Services (HCBS) Waivers: A Nationwide Study of the States

In fiscal year (FY) 2009, the Medicaid program funded over 75% of all publicly funded long-term supports and services (LTSS) for individuals with intellectual and developmental disabilities (IDD) in the United States ( Braddock et al., 2011 ). The majority of spending was attributed to the Home and Community Based Services (HCBS) Waiver program. In FY 2009, federal-state spending for the HCBS Waiver program reached over

State of the States in developmental disabilities: 2004.

25.1 billion and constituted almost half of total funding across the nation that year ( Braddock et al., 2011 ). Considerable effort has been spent investigating Medicaid program expenditures, however, due in part to the unique and state-specific nature of HCBS programs, national-level analysis on the types of services offered to individuals with IDD has not been available. A full understanding of the supports available through the Medicaid program is critical as the United States considers strategies for economic recovery among competing state and federal budget priorities. This article presents the results of an analysis of 88 Medicaid HCBS Section 1915(c) waiver applications for individuals with intellectual and developmental disabilities in 41 states and the District of Columbia. It analyzes IDD data and trends close to the real time intent of states and empowers advocates in presenting timely solutions to real-time issues.

Family support services for persons with intellectual and developmental disabilities: recent national trends.

Public spending for MR/DD services grew rapidly during FYs 2000-2002. This rapid growth was followed by reductions in spending for MR/DD services as the nations economy declined during 2002-2004. However, convergent factors stimulating future expansion of funding and services for persons with MR/DD include rapidly expanding cohorts of aging caregivers in the states, increasing longevity of persons with MR/DD, and extensive litigation in the states promoting access to services.

Most employment services growth in developmental disabilities during 1988-2002 was in segregated settings.

Family support data have been collected for the past 21 years by the State of the States in Developmental Disabilities project. New data were recently collected from the states for fiscal years (FYs) 2005 and 2006 (Braddock, Hemp, & Rizzolo, 2008). This article summarizes trends in family support services and spending nationally and in the individual states. Support for children and adults with intellectual and developmental disabilities living in the family home, hereafter referred to as ‘‘family support,’’ varies greatly across the nation. States have great latitude in determining what services and supports will be included in their family support program as well as in determining whether children, adults, or both, will be eligible to receive the supports. Services and supports that states offer to families with children or adults with intellectual and developmental disabilities may include respite services; financial services, such as cash subsidies and vouchers; in-home supports, such as personal assistance or homemaker services; assistive technology and environmental modification; adaptive medical equipment; health and professional services; therapies; family counseling; family training; parent support groups; transportation; recreation activities; and specialized clothing and dietary services. Family support has been a rapidly growing service model in recent years. As shown in Figure 1, between FYs 2000 and 2006, the number of individuals receiving family support services increased by over 108,000 (34%). Total adjusted expenditures for family support increased from

Mental/Behavioral Health Services: Medicaid Home and Community-Based Services 1915(c) Waiver Allocation for People With Intellectual and Developmental Disabilities

1.3 billion to

Dental Services: A Nationwide Study of Medicaid Home and Community-Based Services (HCBS) Waiver Service Allocation

2.3 billion during that same period. In the 2 years between FYs 2004 and 2006, there was an increase of 43,000 families supported nationwide, from 385,579 to 428,803 families. Inflationadjusted family support spending increased 7% from FYs 2004 to 2005, but the growth rate was only 2% from FYs 2005 to 2006. Table 1 presents family support program expenditure, revenue, and participant data for the states in FY 2006. Family support spending nationwide in FY 2006 constituted only 5% of total intellectual and developmental disabilities spending (

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

43.84 billion). Of particular note has been the dramatic increase in the percentage of total family support spending reimbursed by the Medicaid Home and Community Based Services (HCBS) waiver, increasing from 62% of total family support funding in FY 2004 to nearly 70% in FY 2006. Fifteen states financed 90% or more of their family support services with Medicaid HCBS; 11 states financed their family support activities solely through state funding. In FY 2006, annual nationwide family support spending per family averaged

Un/Paid Labor: Medicaid Home and Community Based Services Waivers That Pay Family as Personal Care Providers.

5,376, ranging from

“Get us real jobs:” Supported employment services for people with intellectual and developmental disabilities in Medicaid Home and Community Based Services Waivers

232 per year per family in Alabama to over