March is National Developmental Disabilities Awareness Month. The goal is to raise awareness about the inclusion of people with developmental disabilities and address the barriers that those with disabilities face. On March 21, World Down Syndrome Day, individuals with Down syndrome and those who live and work with them raise public awareness and create a single global voice advocating for the rights, inclusion, and well-being of people with Down syndrome.
These commemorations also provide an opportunity to focus on the family members and direct care employees who care for individuals with intellectual and developmental disabilities and the importance of their physical and mental health.
How do direct service employees, working in a stressful environment, maintain their mental wellness? How can family members seek help and take care of their mental well-being while caring and advocating for their loved ones?
As it is becoming more difficult to recruit and retain an adequate workforce, everyone suffers including people with an intellectual or developmental disability that New York State is charged to support. Families experience more pressure and worry as a result, as do staff members that can’t provide adequate support due to short staffing. Emotionally the person with an intellectual or developmental disability, families, and staff are all affected.
Max Donatelli
Community Advocate
The Anti-Stigma Coalition hosts a Facebook Live on Wednesday, March 15 at noon to discuss these issues and share mental health resources. We’ll hear from provider agency representatives and family members who will talk about everyday stress and long-term challenges along with coping strategies.
Panelists are Stacey Book, self-direction specialist coordinator, People Inc., Max Donatelli, community advocate, and Renee Filip, ceo, Aspire. The moderator is Frank Cammarata, executive director, Erie County Office for People with Disabilities. The event is free and open to the public and viewers will have the opportunity to ask questions during the event.
The People Inc. admissions team indicates that families experience a lot of stress, anxiety, and depression along with hopelessness of never getting what is needed. There is also great confusion of where to start and who to contact to get things started to help process and navigate the system of service delivery. The People Inc. team provides reassurance to help them and reminders that they are not alone in this process (in hopes to help minimize the above emotions/feelings).
The People Inc. team also shared that some parents who have a child with an intellectual or developmental disability are often given the “hero/angel” label, so when they have a potential mental health issue or medical concern that affects them or the care of their loved ones, this may be easily explained and understood, but then lose their status as “hero/angel” and are “human like everyone else.”
Families that also struggle financially and/or have limited education and/or do not have strong English language abilities – this adds a new level of stress and may add to the issues of navigating the system, which may lead to mental health concerns.
Donatelli is a community advocate and parent of an adult child with a developmental disability. He said that a significant challenge is the not-for-profit agencies that provide 85% of services for people with intellectual or developmental disabilities have not received cost of living adjustments in over ten years. As a result, as the minimum wage has gone up in New York State, the heretofore decent paying jobs in the field are closer now to minimum wage jobs.
“Most of these jobs require caring, committed and compassionate staff who are willing to take specialized training and be responsible for the quality of lives for people in their care,” Donatelli said. “Due in part to the substandard pay, more entry level applicants look to easier jobs with less responsibilities and comparable pay.”
85%
of services for people with intellectual or developmental disabilities have not received cost of living adjustments in over ten years.
As a result, it is more difficult to recruit and retain qualified staff. With growing staff vacancies, those that are working can burn out and, in some situations, must do mandatory overtime, which effects personal and family time, and some end up leaving all together.
According to Donatelli, as it is becoming more difficult to recruit and retain an adequate workforce, everyone suffers including those with people with an intellectual or developmental disability that New York State is charged to support.
“Families experience more pressure and worry as a result, as do staff members that can’t provide adequate support due to short staffing,” he said. “Emotionally, the person with the disability, family members, and staff are all affected. All can need help.”
People Inc. offers support to its 4,000 staff members with access to its Employee Service Line, where staff are provided with various referral sources. The agency also offers an Employee Assistance Program through Child and Family Services Employee Assistance Program, which provides staff with extra support to help with a variety of issues.
Child and Family Services Life Assistance Program offers services designed to help reduce stress, balance work and family responsibilities and improve the quality of your life. The program consists of resources and referral services, counseling and support services, online information, and interactive tools. All services are free, confidential, and accessible 24 hours a day, 365 days a year.
