Horrific conditions facing people with intellectual and developmental disabilities (IDD) was in the news again. The British Broadcasting Corporation (BBC) recently released a report on the treatment of people with IDD in “orphanages” in Ukraine including multiple hours of restraint, being left unattended in hot conditions and pools of their own urine, and lack of physical and social activity.
The BBC report is not the first. In 1972, there was documentary exposure of similar horrific conditions at the Willowbrook institution in Staten Island, New York. Two months after the documentary, a successful class-action suit was filed to close the institution and find alternative placements for residents, giving impetus to other class-action suits across the country. The events influenced the passage in 1975 of the Developmental Disabilities Assistance and Bill of Rights Act and the Education For All Handicapped Children Act, and the 1980 Civil Rights of Institutionalized Persons Act.
My 46-year old son benefits from the legislation passed after Willowbrook. He lives in a small group home in a neighborhood north of Chicago. To live there, he relies on Direct Support Professionals (DSPs). These professionals make sure he attends his day program where he is paid for both a piece work job and assisting with janitorial services at the facility. DSPs assist him to attend a theater group in which he and others develop theatrical performances. He participates in art and craft activities and in Special Olympics. The DSPs make sure he has nutritious meals and that he takes his medications. They encourage contact with family and friends. As a parent, I don’t have anxiety about how he will live an active life.
The Covid-19 pandemic highlights the crucial role of DSPs in the health of people with IDD and how fragile the system is. In the early period, other than older age, the presence of intellectual disability was the strongest risk for dying of COVID. My son contracted COVID-19, along with others where he lives. Due to quarantine needs, he relied on staff willing to stay with their clients 24/7. Despite their vital roles, the working conditions of DSPs grew worse during the pandemic. In 2020, the number of DSPs decreased by around 10% as agencies closed some services and, at the same time, increased overtime hours as a way to limit numbers of staff rotating into facilities. Agencies reported not taking new referrals for services. This took place at a time when the need for DSPs is expected to grow with the aging and deaths of baby boomer parents of people with IDD.
DSPs are part of the long-term care workforce that has over-representation of racial and ethnic minorities and faces systemic structural racism reflected in low wages and unstable working conditions. The DSP workforce is majority minority with 60% being people of color and 29% being immigrants. DSPs are overwhelmingly female, with a median age of 47.Two-thirds of them work full-time, with low pay; In 2019 the median hourly wage was $12.80 and had only increased by 2% since 2009. More than half of DSPs also rely on public assistance such as housing, medical, and food assistance to live. About 70% are the primary wage earners in their households. The job turnover rate nationally is about 43%, but is as high as nearly 65% in some states.
Change needs to happen. At the federal level, one issue is the lack of a Standard Occupational Classification for DSPs. This means that data collected using the classification system are not useful in determining workforce trends, shortages, and needs of DSPs. In April, 2021 Senators Maggie Hassan (D-New Hampshire) and Susan Collins (R-Maine) re-introduced the Recognizing the Role of Direct Support Professional Act that would direct the Office of Management and Budget to establish a separate standard occupational code for DSPs. There have been efforts to address the issue for years; It is time for the legislation to be passed.
Pay of DSPs is affected by state budgets. Advocates in Tennessee, including consumers with IDD and family members, were successful in budget legislation that included a substantial pay increase for DSPs. Such action needs to be taken in other states. Competency-based training requirements for DSPs have been implemented in New York, although training requirements vary between states and federal requirements are lacking. You can work in your state to address training requirements. National and state organizations have ongoing advocacy efforts to improve the status of DSPs. Get involved. If there is no staff, no services will be available.