June 3, 2020
Governor Larry Hogan, Chair Governor Andrew Cuomo, Vice Chair National Governors Association 444 North Capitol Street, Suite 267 Washington, D.C. 20001
Dear Governors Hogan and Cuomo,
On behalf of the Autism Society of America, thank you for your national leadership of the National Governors Association (NGA) during this unprecedented public health and economic crisis. We recognize what a tremendous responsibility it is to lead our governors in helping their citizens with a novel, lethal virus. We also recognize how difficult it has been to acquire federal assistance with supplies and manpower.
The Autism Society is the largest and oldest grassroots organization representing individuals with autism and their families. We represent 77 affiliates nationwide that have direct contact with individuals with autism and families. We are currently doing everything possible to help them stay healthy physically and mentally. At the national level, we are advocating for federal assistance to the states to help you deal with the crisis.
The Autism Society is pleased that some governors are becoming more proactive in assisting vulnerable individuals in nursing homes. For example, some states--Maryland and New York as examples--have established “strike teams” to go into nursing homes to provide cleaning, testing, contact tracing, and medical care. We also appreciate your attention to providing data on hospitalizations, mortality rates, and testing for those in nursing homes.
These actions, however, do not help vulnerable populations such as those with autism who do not live in nursing homes or large institutions. A significant number of individuals with autism and other developmental disabilities live in community provider-based group homes or Intermediate Care Facilities for individuals with intellectual and developmental disabilities (ICF/ID). These individuals are also extremely vulnerable, as are their direct care staff.
We strongly urge the governors to allocate a portion of the almost $3 trillion federal aid provided by the first three COVID-19 relief packages to the Home and Community-Based Services and ICF/ID so that may also protect their vulnerable population and staff.
These community-based homes are being ravaged by COVID-19. Like nursing homes, these individuals live in congregate settings that make it very difficult to practice social distancing. In addition, many individuals with autism have difficulty understanding and practicing social distancing and other new rules. Some may have sensory issues and are unable to wear face masks. Many of these individuals also have comorbid health conditions, making them more susceptible to catching the Coronavirus and ending up with complications of COVID-19.
The pandemic has pushed disability service providers to the brink of collapse. Already strained with a workforce shortage and staff turnover rates near 50 percent before the crisis, these providers must now contend with plummeting revenues and rising operating costs. A recent survey of providers by ANCOR found that only half of the providers have enough resources to stay in business for one month. Meanwhile, direct support professionals (DSP employed by these providers continue to serve their clients around the clock, all while confronting the same equipment shortages as hospitals and other providers. DSP need personal protective equipment, hazard pay, and access to health care for themselves.
We were pleased to see the NGA letter requesting an additional FMAP for Medicaid increase to 12 percent. We agree that this is needed. The Autism Society is also advocating for an additional increase dedicated to Home and Community-Based services. We urge Governors to use this increase to make lasting systemic changes to capacity-building efforts for home and community-based services and supports. These changes include:
● Increase reimbursement rates for agencies providing home and community-based services under the State Medicaid program and who employ DSP, including independent providers in a self-directed or consumer-directed model. The increased rate must be used to increase the compensation of DSP. ● Provide paid sick leave, family leave, and hazard pay, overtime pay, and shift differential pay for home health workers and DSP. ● Provide home and community-based services to eligible individuals who are on waiting lists for programs. ● Purchase and provide testing, emergency supplies and equipment, including personal protective equipment. ● Recruiting and training of additional DSP. ● Allow day-services professionals to provide home and community-based services. ● Funds for other expenses to enhance, expand, or strengthen Home and Community- Based Services, including retainer payments.
As leaders of the state governors, we urge you to continue providing guidance related to the civil rights of people with autism and other disabilities. We continue to be concerned about medical rationing in hot spots where hospitals can be overwhelmed. State leaders and first responders must be made aware of the civil rights of people with disabilities. The U.S. Office of Civil Rights issued a Bulletin on March 28 affirming the civil rights of people with disabilities to lifesaving treatment. In addition, when individuals with autism or developmental disabilities must go into the hospital for treatment, these individuals need exceptions allowing a caregiver to accompany them.
Finally, many families have been separated from their adult children with autism due to new rules forbidding anyone to go into or out of group homes. Governors need to provide consistent guidelines for group homes and families and ensure that families are able to visit safely. We also strongly encourage you to include home and community-based settings as you develop and execute plans for reopening.
As states begin to recover and reopen schools and businesses, the Autism Society of America is here to assist state and local officials.
Sincerely,
Christopher S. Banks President and Chief Executive Officer
Cc: Joseph Joyce, Chair of the Board of Directors, Autism Society of America Affiliate Leadership of the Autism Society of America