NADD U.S. Policy Update (from the NADD Bulletin Volume VIII Number 2)

Complete listing

The Dark Cloud over Residential Services Options for Persons with Intellectual Disabilities and Mental Health Issues

Terrence McNelis, MPA

Nearly 28 years after the initiation of the movement from a reliance on institutional services to community based services for person with Intellectual Disabilities/Developmental Disabilities, a dark cloud is gathering that could jeopardize over a quarter of a century of progress. Without a strategy implemented to address current workforce issues and residential program design limitations, services and supports will continue to fail to address the needs of many individuals with co-occurring intellectual disabilities and mental health issues in the coming years.

Since the middle 1970's, there has been a trend toward community integration for individuals with disabilities, and a state sponsored increase in the development and provision of community based residential services. In addition to a shift from institutional to community settings during this time, increased life expectancy has resulted in the demand for services growing more rapidly than in previous periods (Janicki, Dalton, Henderson, & Davidson, 1999). By the 1990's, the number of persons with ID/DD receiving services grew by 36% (Prouty et al., 2003).

Statistics generated by the Research and Training Center on Community Living Institute (RTC) at the University of Minnesota in 2004 show over 400,000 persons supported by the Home and Community Based Services (HCBS) Medicaid Waiver across the United States. This in comparison to the dwindling number served in congregate settings throughout the U.S. As of 2005, the community based model has become the predominant method of providing supports and services for persons with Intellectual Disabilities/ Developmental Disabilities (ID/DD), including those with mental health needs.

Although there is an increase in community based service provision, the range of services may vary widely between states and locales. In FY 2002, $35 billion was spent across federal, state and local communities on non-educational services to persons with ID/DD. These services are funded on a state by state basis, and because local flexibility is allowed, there is also a significant difference in the application of the service (Harmuth and Dyson, 2004). Recent constrictions on Medicaid programs have increased economic pressures on community based services to improve cost effectiveness by adding to the number of persons served while reducing financial supports. To meet this increase in demand, states are attempting to convert "State Only Funds" programs to HCBS to maximize the federal participation that would allow more persons to be served while using the same amount of state money.

Financial restrictions have dramatically affected the compensation of the direct support workforce. In stark contrast to the explosion of community based services, are the wages that are paid to the Direct Support Professional in the ID/DD field. The shift from state run developmental centers to contracted services provided by non-state employees has coincided with a reduction in compensation (Braddock and Mitchell, 1992). A 2002 wage study conducted by RTC in conjunction with the Institute on Community Integration (ICI) shows an average starting salary of $7.33 with an overall average of $8.68. The lowest starting salary by a state contracted provider was found to be $5.25/hr with a $5.88/hr average hourly wage for all workers in the same state. In some locales, the compensation for Direct Support Professionals by provider agencies is not considered to represent a "living wage", as it falls short of funds to pay for basic needs such as food, clothing and housing. These rates are to be compared with a US average for state run facilities in FY2000 of $15.68 for the provision of equal work.

Additionally, Larson, Lakin and Hewitt, (2002) found staff turnover rates for contracted agencies consistently ranged from 50% to 75% as compared to a 20-25% in state operated services. There is a belief that the critical turnover rate combined with recruitment difficulties has jeopardized the basic well being of the persons supported. Most states have established initiatives to battle against salary discrepancies. However all too often, the cost of the remedy exceeds the state's fiscal capacity and the inequities remain. The National Alliance for Direct Support Professionals is attempting to influence Congress to increase funding to meet this critical need for equitable compensation.

The Aging field suffers from similar salary and turnover troubles as in ID/DD provision of supports and services. As the field of long term care goes deeper into crisis, increased federal oversight has been launched to find the causes for the possible quality issues that have arisen. In an allied field, the US Government Accounting Office (GAO) has conducted audits in Medicaid funded Long Term Care Facilities for the elderly population. In the 15 states audited, serving 266,700 elderly individuals, eleven of the states audited failed the GAO Standards.

The remedies for this crisis should not be limited to the increase in wages although that remains an essential ingredient. There are other initiatives that need to be funded and expanded in order to avoid a national emergency. The first is the investment in families and their abilities to make budgetary and monetary decisions with their family member with ID/DD. Not only have the studies shown higher satisfaction with the service, but also less reliance on the separate residential setting as the life solution. Life sharing and in-home services are more frequently selected and this choice could be increased if respite capacities were expanded for this group of individuals.

The use of technology must be considered to replace the monitoring role of paid professionals so that their efforts could be re-directed toward the relationship building that is essential to satisfactory support to persons with services. The Coleman Institute at the University of Colorado is researching the development of "Smart Houses" that would maximize current and future technology to reduce reliance on Direct Support Professionals. A word of caution is offered regarding the current trend of increasing the number of individuals living in residential settings to gain economies of scale. Although there may be some savings on the fixed housing costs, the field of ID/DD is so very staff intensive the savings may be offset by the need for additional staff.

In summation, the black clouds are truly gathering over the field of ID/DD especially in the realm of community based residential services. As individuals with ID/DD, their families and the professionals that support them, we should strongly advocate for equitable and reasonable wages for Direct Support Professionals at our State and Federal levels. We should also advocate for less staff intensive models of service so that people may be supported more in alignment with their dreams and wishes while reducing the unmet national demand for Direct Support Professionals.

References

Braddock, D., and Mitchell, D.(1992). Residential services and developmental disabilities in the United States: A national survey of staff compensation, turnover and related services. Washington, D.C.: American Association of Mental Retardation.

Harmuth, S., & Dyson, S., (2004). Results of the 2003national survey of state initiatives on the long term care direct care workforce. Raleigh, N.C.: Paraprofessional Healthcare Institute and North Carolina Department of Health and Human Services, Office of Long Term Care.

Janicki, M., Dalton, A., Henderson, C., and Davidson, P. (1999). Mortality and Morbidity among older adults with intellectual disability: Health services considerations. Disability and Rehabilitation, 21, 284-294.

Larson, S.A., Lakin, K.C., & Hewitt, A.(2002). Direct Support Professionals. In R.L. Schalock, P., Baker and M.D. Crosser (Eds.), Embarking on a new century: Mental retardation at the end of the20th century (pp. 203-20). Washington, D.C.: American Association on Mental Retardation.

Prouty, R.W., Smith, G., and Lakin, K.C. (Eds.). (2003). Residential services for persons with developmental disabilities: Status and trends through 2002. Minneapolis: University of Minnesota, Research and Training Center on Community Living.

Terrence McNelis, MPA is the Vice President for Supports and Services to Persons with Mental Retardation, for Northwestern Human Services in Southeastern Pennsylvania, USA.