People with intellectual disabilities need more state support during COVID-19 | Opinion

As the coronavirus pandemic persists, a new multi-state report provides a grim reminder that this disease is having an especially devastating impact on Individuals with Intellectual Disabilities and/or Autism (ID/A.) Data collected from eight states, including Pennsylvania, show that while these individuals are about as likely to contract COVID-19 as members of the general public, they are significantly more likely to die from a COVID-19 infection than are members of the general public who have contracted the virus.

The report included data from 611,202 people with ID/A from states, including Pennsylvania, representing about 1/3 of the U.S. population. The authors found that likelihood of an individual with I/DA being diagnosed was just 1.1 times more likely than a member of the public. However, once diagnosed, the individual with I/DA was 1.84 times more likely to die than an infected member of the general public.

That is an alarming difference, one that we hope will crystalize support among state lawmakers to support more funding to help keep people with ID/A alive. The stakes are really that high – and that straightforward: more state funding will help save lives. The state and federal government have provided pandemic relief funding to help protect these individuals, but that funding has run out for many providers.

Our organization represents 125 providers, which are responsible for delivering about 2/3 of the supports to people with ID/A in Pennsylvania. We helped to launch this analysis because we rely on hard data to make sure we are providing the necessary supports when and where they are needed.

The report provides a snapshot of the challenges we confront, and recommendations that can assist lawmakers. This entire model of care is funded by public dollars. There is no private insurance available for these services, so our organizations are a partner with the state in every sense of the word.

Absent new funding, these individuals and their families will suffer. The Direct Support Professionals (DSPs) who deliver hands-on care 24/7 to these individuals will continue to confront a higher threat of catching COVID-19 while working for substandard wages. Ultimately, the system of care that we have built in Pennsylvania will no longer be viable and we will slide back to the days of sending these individuals to institutions, hospitals, and nursing homes.

This should be unacceptable to all Pennsylvanians. These children and adults have a right to live at home or near their homes in a community setting.

It is important for your readers to understand just how vulnerable these individuals are – in “normal” times. Individuals with ID/A need assistance with getting dressed, bathing, eating and with their medications. Social distancing is just not possible. Wearing a mask, in many cases, is just not possible. In addition, the vast majority of these individuals have underlying medical challenges and these comorbid conditions place them at a much higher risk. The fact that the rate of infection is only slightly higher is a testament to the work that providers and DSPs are doing to keep these individuals safe.

We have surveyed our DSPs and we found that many could not work because they were justifiably afraid of contracting the virus; they did not have adequate childcare and had to remain home to make sure, for instance, that their children were participating in remote learning; or they did not have transportation.

DSPs also told us that they could no longer work for substandard wages. We also know, based on a survey of provider organizations, that budget woes have forced some agencies to close and others have reduced services. They are running out of money and the adults and children we serve are running out of time. The authors made five important recommendations for lawmakers that address these challenges:

Individuals with ID/A and staff with direct contact with persons with I/DA must be prioritized for receipt of any approved vaccine for COVID-19.","type":"text

Especially now, as COVID-19 infection rates are rising, we need to make sure that adequate Personal Protective Equipment (PPE) is available to providers and all organizations that support individuals with I/DA and DSPs.","type":"text

Funding for COVID-19 rapid testing for persons with I/DA and staff with direct contact with persons with I/DA must be made available.","type":"text

We encourage readers to learn more about the study and the challenges we confront each day to protect our vulnerable neighbors, friends, and family members.

We encourage readers to learn more about the study and the challenges we confront each day to protect our vulnerable neighbors, friends, and family members.

Mark Davis is president and CEO of Pennsylvania Advocacy and Resources for Autism and Intellectual Disabilities (PAR). For more information, visit www.par.net.

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