Editor’s note: The Caregiving Chronicles blog has partnered with Century Health Systems to bring additional expert information and advice to the MetroWest caregivers we strive to serve at CaregivingMetroWest.org. Century Health Systems, the parent corporation of Distinguished Care Options and the Natick Visiting Nurse Association, has allowed Caregiving Chronicles to get some valuable insight from its staff for our ongoing series of Q&A sessions with caregiving experts.
In this entry, we discuss the issues involved in caring for a child or younger adult with a disability or long-term health condition. Providing insight is Judith Boyko, MBA, MS, RN, who has served as the CEO of Century Health Systems since it was established in 2001.
Boyko holds a Bachelor of Science degree in Nursing from the University of Pittsburgh, a Master of Science in Public Health from the University of Massachusetts, Amherst and a Master of Business Administration from Clark University. She has been recognized by the Home & Health Care Association of Massachusetts as Manager of the Year in 1997 and received the Deborah Blumer Community Health Leader Award from the MetroWest Community Health Care Foundation in 2007. She can be reached at firstname.lastname@example.org or 508-651-1786.
Caregiving MetroWest: Every caregiving situation is unique, though there are some common experiences that almost every caregiver can relate to. What are some of the similarities of caring for a child or younger adult with a disability or long-term health condition compared to caring for an older adult?
Boyko: Due to the nature of caregiving, many caregivers experience a similar range of emotions, including guilt, stress, resentment, loneliness, depression, anger and grief, to name a few.
However, advocacy can also play a big role in caring for someone with a disability. “Become familiar with the Americans with Disabilities Act, the Family Medical Leave Act, and other state and national provisions. Know how and when to apply them to your situation,” the Centers for Disease Control and Prevention says.
For additional information, visit the Family Caregivers page of the CDC’s website.
CGMW: What are some of the important differences between those caregiving situations?
Boyko: When it comes to caregiving, there are a lot of similarities, regardless of a family member’s condition. Both elders and people with disabilities may need modifications to their home to ensure their safety. Adaptive equipment, like grab bars, stair lifts and ramps can be helpful to both populations. Some folks with disabilities may need nursing or therapy services, and caregivers of all kinds should always consider respite, which can come in the form of in-home assistance, support groups and counseling.
There’s a great article on AgingCare.com called “10 Ways Caring for Parents is Different than Caring for Children.”
CGMW: Caring for a child or younger adult requires a different set of resources than caring for an older adult. What are some of the things caregivers need to know with regard to issues such as education, government programs and benefits, etc.?
Boyko: As individual as each person is, so is the combination of services he or she may need. Some may need assistive technology, while others may need medication management or administration, housing, or transportation services. Many caregivers also have to consider, financial issues, access to medical support and more.
Some helpful organizations include Autism Speaks, The Arc and United Cerebral Palsy.
The Arc of Massachusetts, which aims to “enhance the lives of individuals with intellectual and developmental disabilities and their families,” has a wonderful resource center on its website.
The Family Caregiver Alliance is also a wealth of information on such programs. Disability.gov has a Guide for Family Caregivers. Caregivers of people who have a disability and who are under the age of 18 can review the Social Security Administration’s “Benefits for Children with Disabilities.” They can also access their state and county Aging and Disability Resource Center to identify long-term services and supports.
In Massachusetts, the Department of Education offers IEPs – Individualized Educational Programs – for those who qualify. Parents can also access “A Parent’s Guide to Special Education” to learn about special education, evaluations IEPs and more. Finally, Benefits.gov, which is a collaboration between 17 federal agencies, devotes an entire section of its website to Disability Assistance.
CGMW: If you have more than one child, how do you balance meeting the needs of a child with a disability or long-term health condition without your other children feeling like their needs are not being met?
Boyko: Caring for children can be overwhelming to begin with. But when one or more of them has a disability and there are other “typical” children, there’s a balance that must be met to make everyone feel special.
Kids can harbor resentment toward their “special needs” sibling, or they can be ashamed of their sibling’s disability. This can lead to strong negative emotions, says Laura Weitzman, coordinator of special education services at Jewish Family Services Central New Jersey.
Parents should consider educating their other children about a sibling’s condition so they can understand the “why” behind any behavior that may seem embarrassing or cause anger. It can also prevent sibling rivalry from becoming much more than that.
Some children may feel the need to overcompensate, as “sometimes their growing up is too fast… they don’t experience some of the things they need to experience as a child, because they’re so responsible for the disabled sibling,” according to Weitzman.
Family meetings, according to Weitzman, can serve as a forum about family life in general. They can serve as opportunities to plan the week ahead while managing everyone’s expectations. Meetings can also serve as a forum for all family members to address their own needs and talk about what’s important to them. Communication can ultimately lead to family members’ needs being met – including children.
CGMW: Caring for a child or younger adult with a disability or long-term health condition can go on for a much longer period of time than caring for an older adult. How can caregivers in that situation avoid burnout?
Boyko: We’ve talked about this issue in the past, and the advice remains the same. With the duties of caregiving comes stress and what’s known as caregiver burnout. No matter who the caregiver cares for, there are some tried and true ways to avoid that burnout:
• Go on a walk
• Read a book
• Paint or color
• Meditate or practice yoga and/or deep breathing
• Plant or tend to a garden
• Get a massage
• Seek counseling
• Hire professional caregivers
CGMW: What can a caregiver in such a situation do to reduce stress and make sure they are taking care of their own health and well-being?
Boyko: There are some very basic tips to heed: eat well, get enough sleep, exercise regularly and ask for help when caregiving gets to be too much.
CGMW: Is there anything else you think someone caring for a child or younger adult with a disability or long-term health condition should know?
Boyko: The most important thing caregivers should know is that they are not alone. There is a vast community and a wide network of family caregivers, many of whom experience both the rewards and the challenges of caregiving. Tap into that network for moral or emotional support, for guidance, and for respite – and to foster a sense of community when isolation is imminent.