5 Ways to Support Disability Parenting During Family Caregiver Awareness Month 2023

November marks the beginning of Family Caregiver Awareness Month, also known as National Family Caregivers Month, which was officially proclaimed by former President Bill Clinton in 1997 to honor those whose essential labor often goes unseen. During this month, we observe and highlight the sacrifices and efforts of family caregivers, in and out of the workplace, emotionally, physically, and financially for families living with disabilities, chronic illnesses, invisible disabilities, and more. We would like to spread awareness about caregivers and shed light on how better to support disability parenting in the workplace. 

The Importance of Family Caregivers

Family caregivers play a pivotal role in our society, providing essential support and care to loved ones who are aging, ill, or living with disabilities. Their dedication and sacrifice often go unnoticed, yet their impact is immeasurable. Family caregivers not only ensure the well-being and comfort of those they care for, but also reduce the burden on healthcare systems and institutions. Their role is multifaceted, encompassing physical, emotional, and logistical care, and it often comes with significant challenges and sacrifices including overwhelming burnout. Recognizing the importance of family caregivers is critical for ensuring that they receive the support, resources, and appreciation they deserve as they navigate the complex and often demanding role of caregiving.

What is Disability Parenting?

Disability parenting refers to the experience of raising and caring for a child with disabilities. It involves the unique challenges, responsibilities, and joys that come with providing physical, emotional, and often medical support to a child who has one or more disabilities. Disability parenting encompasses a wide range of conditions and disabilities, including but not limited to physical disabilities, developmental disabilities, neurodivergent disabilities, sensory impairments, and chronic health conditions.

10 Challenges Faced by Parents Raising Children with Disabilities

Disability parenting involves a unique set of challenges that parents of children with disabilities face. These obstacles can vary depending on the nature and severity of the child's disability, but some common difficulties include:

• Emotional and Psychological Stress: Parents of children with disabilities often experience higher levels of stress, anxiety, and depression. Coping with the emotional impact of a child's disability, managing their own expectations, and dealing with societal stigma and misconceptions can take a significant toll on parents' mental health.

• Financial Strain: The cost of caring for a child with disabilities can be substantial. Medical expenses, therapies, assistive devices, and specialized education or childcare services can strain a family's finances. Navigating the complexities of insurance and government assistance programs can also be challenging.

• Time and Energy Demands: While all parenting requires a significant amount of time and energy, parents of children with disabilities may need to provide round-the-clock care, attend numerous medical appointments and therapy sessions, and constantly advocate for their child's needs. This can leave little time for self-care or other family members.

• Limited Social and Leisure Opportunities: Parents of children with disabilities may have limited opportunities for socializing and leisure activities due to their caregiving responsibilities. This social isolation can impact their own well-being and relationships.

• Educational and Advocacy Challenges: Ensuring that their child receives an appropriate education and necessary accommodations can be a complex and ongoing process. Parents may need to navigate Individualized Education Programs (IEPs), 504 plans, or other educational support systems.

• Uncertainty About the Future: Parents often worry about their child's future, including long-term care, independence, and financial stability. Planning for the future can be daunting, especially when there are uncertainties about the child's development and prognosis.

• Physical Demands: Depending on the child's disability, parents may face physical challenges related to lifting, transferring, and providing daily care. This can lead to physical strain and injury.

• Imposter Syndrome and Societal Stigmas: Parents and their children may encounter societal stigma and discrimination, which can be emotionally distressing and contribute to an increase in imposter syndrome both personally and professionally. Ongoing discrimination can manifest in the form of stares, comments, or exclusion from social activities or even inaccessible locations..

• Balancing Sibling Needs: If there are siblings in the family, parents may struggle to balance the needs of their child with disabilities with the needs of their other children without disabilities.This can create feelings of guilt and present additional challenges in maintaining family harmony.

• Limited Respite Care: Finding qualified and affordable respite care providers can be difficult, which can leave parents with few opportunities for breaks from caregiving.

Disability Parenting in the Workplace: 5 Ways You Can Support Your Team

Supporting disability parenting in the workplace is a necessity! We need to create an inclusive and accommodating environment for employees who have children with disabilities. 

Here are five ways employers can better provide support:

1. Flexible Work Arrangements:

• Offer flexible work hours or remote work options to accommodate parents' needs, such as attending medical appointments or managing caregiving responsibilities.

• Allow parents to adjust their schedules or work from home when necessary, without penalizing them or affecting their job security.

• Consider a compressed workweek or part-time schedules for parents who require more flexibility.

2. Family-Friendly Policies:

• Implement family-friendly policies, such as paid family leave, that extend beyond traditional maternity and paternity leave to include time off for caregiving or medical appointments related to a child's disability.

• Provide access to unpaid leave or job-protected leave under laws like the Family and Medical Leave Act (FMLA) for parents who need extended time off.

3. Accommodations and Support:

• Ensure that the workplace is physically accessible and that reasonable accommodations are readily available for employees with disabilities.

• Provide support, such as an employee assistance program (EAP) or counseling services, to help parents manage stress and emotional challenges associated with disability parenting.

4. Education and Sensitivity Training:

• Conduct disability awareness and sensitivity training for all employees to foster a more inclusive and supportive work culture.

• Train supervisors and managers on how to be accommodating and understanding of parents' needs without making them feel marginalized or stigmatized.

5. Employee Resource Groups (ERGs):

• Establish or support employee resource groups that focus on disability inclusion and parenting. These groups can provide a sense of community, peer support, and a platform for sharing information and resources.

• Encourage employees to participate in ERGs and offer them opportunities to contribute to workplace policies and practices related to disability parenting.

How The Rise Journey and Extra Lucky Moms are Supporting Disability Parenting

The Rise Journey has partnered with advisors Jess & Taryn of Extra Lucky Moms to offer a series of informative and supportive lunch and learn programs tailored specifically to the needs of disability parenting. These engaging sessions cover a wide range of topics, including disability parenting support, acceptance, advocacy, and addressing the challenges faced by parents of children with disabilities. Participants can also explore valuable insights on burnout prevention and workplace strategies. 

By combining expertise and resources, space is created for parents, caregivers, and professionals to come together, share experiences, and gain valuable knowledge in order to better navigate the complex journey of disability parenting and how to better support one another. 

We encourage you to take part in the observance of Family Caregiver Awareness Month 2023, show your support, and help raise awareness about the vital role family caregivers play in our society. It's time to recognize the dedication and effort of parents and ensure they get the support they deserve.