Blog: Family Connections with Pediatrics
Providing high-quality care to children with medical complexity (CMC) requires more than a team of skilled doctors, nurses, and therapists. Families also play a vital role. Yet, families are sometimes not systematically valued in their role as providers of essential care, which has significant consequences for families and society. Anchored in one family’s story with home healthcare that is typical of many other families also trying to care for their CMC while earning a living, this month’s Pediatrics features a Family Partnerships article, “Employing Family Caregivers: An Innovative Healthcare Model,” which describes Colorado’s response to this challenge (10.1542/peds.2021-054273).
What are some of the challenges with home health care for children?
The article begins by sharing the story of the Blakely family. Mrs. Blakely’s story highlights the significant time and effort that she spent on healthcare at home, as well as the effect it had on her family, health, and ability to work outside the home. The authors then share some of the data that support this story:
- Although only 3 in 50 children with Medicaid are CMC, they account for 1 in 3 dollars of Medicaid spending
- This spending on care for CMC does not account for the substantial, daily, unpaid medical care provided by their family members
- At least half of US family caregivers spend > 21 hours per week providing unpaid healthcare at home for their children
- An understaffed, underfunded, and undertrained pediatric home health workforce leads to care that is unreliable and of poor quality
What is Colorado’s response to these challenges?
In 2001, families, community advocates, and Colorado lawmakers established a program (the Paid Family CNA Model) within Medicaid to allow family members, including parents, to be paid as certified nursing assistants (CNAs) for their own CMC. To begin, the family member (including the parent or legal guardian of children under age 18) must complete a standard assessment tool to see if the child qualifies for CNA care. Next, the family member must complete an approved nurse assistant training program and pass a written and clinical exam. Once licensed, the family CNA must be hired by a home health agency where they will be paid the same rate as other CNAs to care for their child.
The authors reflect that other states may have been slow to adopt similar models based on the belief that these models require an increase in budget. In fact, the article states that such programs are “budget-neutral” because the states’ duty to provide home healthcare to eligible children does not change, regardless of whether family members or others are paid for CNA services.
The authors conclude the article by noting challenges, future needs and ways to support a family CNA program, such as:
- The need for respite options in paid family caregiver models
- How to support family members who want to use their CNA license to qualify for future work elsewhere
- The importance of ensuring that the care team and family find time to discuss, and stay updated on, needs for home health care
- Connecting with family-led organizations to find the best care options for the child and advocate for healthcare system changes. Family-led organizations are staffed by families of CMC who have personal and professional expertise with systems of care.
How can you use this article?
- If you are not already connected with a family-led organization in your state, follow these links to find out more information:
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- Family Voices is a national family-led organization: familyvoices.orgi
- Family-to-Family Health Information Centers (in every state, 5 territories and 3 tribal groups) are funded by the federal government to provide information to families, providers, and professionals to navigate and transform systems of care: Affiliate Archive - Family Voices
- Parent to Parent USA (with chapters across the country) provides emotional support to parents of CMC: P2P USA | Supporting Parents Nationwide
- The National Federation of Families (with chapters across the country) advocates on all levels for families of children with mental and behavioral health and substance use: National Federation of Families, Family Voice, Family Peer Support (ffcmh.org)
- If your child qualifies for home healthcare and you struggle to fill approved shifts, provide the care yourself, and/or care for your family while also working outside of the home, talk to a family-led organization or your child’s doctor to find out if your state has a model of paid family caregiving.
- During the COVID-19 public health emergency, some states allowed families to be paid to provide care for their children under age 18. Although this may have been temporary, some states are talking about how to build a permanent model to pay family caregivers. Connect with a family-led organization to find out how to join in such discussions.
i The author of this Family Connections with Pediatrics is the Director of Policy and Advocacy at Family Voices and also a CO-PI in Home Health Care Policies Are Target of New Foundation Grant | Lucile Packard Foundation for Children's Health (lpfch.org).
