[This is a guest opinion piece by Lorie Winn, Chief I/DD Officer at Cobb County Community Services Board]
There is no individual in the world not impacted by COVID-19, but living in a pandemic is a particular challenge for individuals with intellectual/developmental disabilities (I/DD) and their families. Caring for the mental health and wellness of adults with I/DD is paramount in a time that can confuse and disrupt lives. In a population that relies on a unique and often individualized support network, community caregivers and families must become innovative and resourceful in order to ensure the care of individuals with developmental disabilities.
According to the CDC, most people with disabilities are not inherently at higher risk for contracting COVID-19. However, some people with disabilities might be at a higher risk of infection or severe illness because of their underlying medical conditions. For agencies like Cobb County Community Services Board (CCCSB) and other community service boards throughout the state who serve those with I/DD in residential settings, they are required in the State of Georgia by the Department of Behavioral Health and Developmental Disabilities (DBHDD) to develop safety plans for the precaution for staff and individuals served.
To assist in this process, some long-term residential services have partnered with the state Department of Public Health and Georgia Army National Guard to assist in a deep cleaning of residential locations. Agencies like CCCSB have issued personal safety equipment, and staff and residents have their vitals taken daily. Staff must report suspected exposure and confirmed cases of COVID-19 to the state. For families caring for an individual with I/DD at home, maintaining a clean and healthy environment is essential. Daily cleaning can also become part of the routine schedule and can include the entire family—teaching valuable life-skills in a home setting.
When explaining the new “normal” to individuals with I/DD, communication is very important to minimize any fears or concerns they may have. Communicating through pictures can be helpful to those with I/DD, as can participating in discussions while watching the news. Individuals with I/DD may need additional assistance in processing information, but it is important to explain to them in a manner that is reassuring why they cannot leave their group home or their family home for external activities and the risks involved in going out into the community.
Day programs that many in the I/DD community participate in are currently not operating because of government restrictions. Therefore, it is key to set a routine at home that offers the necessary structure to a day. An important part of a routine should include exercise and some kind of movement daily. What that looks like may be different for every person: some may like stretching inside, others may enjoy going out in the yard and moving around. Parameters should also be established and encouraged for going to bed and waking up, and caregivers must explain why people might wear personal safety equipment and why it is important to wear it.
As those with /IDD are typically engaged in activities both inside and outside, it can be helpful now to plan activities that promote celebration. Seasonal events like spring, Flag Day, and Fourth of July are good starting points for arts and crafts activities. Visiting the backyard for a picnic or treasure hunt can also provide stimulating activity as well as exercise.
During this stressful time, it is also important to recognize the importance of mental health. We all may have feelings of anxiety and depression even in the absence of a pandemic. The change in routine can be stressful, and any unusual behavior should be discussed with a professional. Further, caregivers who are normally afforded a form of respite though a family member’s structured day-program may now be experiencing anxiety, stress, and depression while caring for someone at home 24 hours a day.
Those experiencing stress and anxiety are encouraged to reach out for help. While many I/DD professionals are working from home due to the state-directed temporary closure of programs, staff is still providing emotional support and are in weekly (or more) contact with families. State Community Service Board staff members are aware of resources for food and supplies that are specific to the needs of the I/DD community. They are also knowledgeable on information regarding stimulus checks for people receiving disability payments—providing the facts so that people can make educated decisions during these difficult times.
The bottom line is, if you or a family member needs help, don’t be afraid to reach out. It is important communicate with the provider who has been involved historically in your life. They will take the time to talk and help get the supports that are needed. People and families in the I/DD community are resilient and strong because of their life experiences. They are the greatest advocate for one another because they are the voice for their children.
Lorie Winn is the Chief I/DD Officer for the Cobb County Community Services Board. The agency serves more than 200 people with I/DD by typically offering day services, supported employment, community living supports, long-term residential facilities as well as family home service. The Community Access group closed on March 16 because of state requirements for social distancing. The residential component of the I/DD program remains open. Supported Employment services are being provided through telecommunication options. The agency staff is still in contact with the families it serves and is always available as a resource to families, including on-going family support for regular nutritional supplies, incontinence, and other needed supplies.