4
Home Care Settings
Chanda Jones (Committee Member) introduced this session of the workshop where speakers focused on home care settings as well as how innovative ideas, suggestions, and best practices developed during the pandemic in this area could be leveraged to improve care for children with disabilities in the future.
RENOVATING HOME HEALTHCARE
One-in-20 home health patients in the U.S. are children, said Carolyn Foster (Northwestern University Feinberg School of Medicine; Children’s Hospital of Chicago). When children are discharged from the hospital, one-in-five are discharged with care service or supply, one-in-20 are discharged to home care, and one-in-50 are discharged with a private duty nurse. Home care is a critical part of taking care of children with illness or disabilities, she explained, and can include nursing care, long-term shift care, health care aides, as well as personal care for daily living. Foster shared three “revelations” from the pandemic related to homecare: home care as integrated healthcare, home care as secure employment, and home care as measured care.
Home Care as Integrated Healthcare
There is an unfortunate separation between home care and the pediatric healthcare systems, said Foster. This became more evident during the pandemic, when credentialing and other barriers prevented nurses from
working collaboratively across systems and settings, even as families were scrambling to get home healthcare. In order to address this issue, said Foster, it is necessary to integrate and align home care with other larger healthcare systems. Research has shown that integrating electronic health records is an important step to aligning systems; Foster suggested that subsidizing the costs of this integration could be a way of making progress. Another approach for aligning systems is to incentivize a shift to value-based care, which may encourage better investments in the home healthcare area. Foster said that the pandemic sparked a move to increase the size of the workforce for home care, but that credentialing processes and systems alignment also need to also be addressed in order to decrease barriers.
Home Care as Secure Employment
Despite the critical importance of home care, said Foster, there are employment- and payment-related rules that create challenges for both patients and providers. For example, if a child is hospitalized, home care providers cannot get paid by Medicaid for the days he or she is in the hospital. Another systemic issue that was highlighted during the pandemic, said Foster, is that children who were reliant on school-based aides during school hours were not able to access these caregivers while attending remote class, due to regulations that required aides to provide service in a school setting. As a result of this gap, Foster said that many parents had to reduce their work hours in order to ensure that their child received the care they needed. Both of these issues created problems with continuity of care for patients, as well as employment instability for homecare providers. Employment instability contributed to the home nursing shortage, which was further exacerbated by pandemic pay raises being offered in hospitals. There are clear opportunities in this area moving forward, said Foster. First, Medicaid rules can be revised so that home providers can retain their pay for a certain amount of time if the patient is hospitalized. Second, rules can be changed to allow school-based providers to provide care at home if the student is attending class remotely. Third, approaches should be explored for allowing family caregivers to be paid for the care they provide in the home. This can help minimize turnover and reduce family financial strain or poverty. Finally, pay should be made competitive and commensurate with comparable hospital-skills jobs. Foster noted that a nurse caring for a child at home with a ventilator is using the skills that are used in the Intensive Care Unit; the nurse’s pay should reflect this. Foster emphasized, however, that there is a need to ensure that pay increases are passed through to the providers, rather than absorbed by the agencies.
Home Care as Measured Care
During the pandemic, said Foster, it became very clear that there is lack of ability to identify and track children with disabilities, and a lack of measures to compare and track care. There are opportunities to address this challenge on both the federal and state level. In 2020, the Centers for Medicare and Medicaid Services (CMS) put out a call to establish home and community-based services metrics. There needs to be a financial and logistical commitment from the federal government to bring stakeholders together to develop pediatric metrics. On the state level, Foster explained, there is a need for better systems for monitoring the care that is provided, and engaging experts, patients, and families in a process to ensure that those in need are receiving family-centered, accessible, quality care.
CAREGIVER ACTION NETWORK
During the pandemic, many family members were thrust into the caregiver role for the first time, said Nichole Goble (Caregiver Action Network). A survey found that 13 percent of unpaid caregivers in the U.S. began their responsibilities as the result of the pandemic; she said this could be due to bringing a loved one home from a facility, or due to paid caregivers not being able to come to the home. Caregivers who had provided care pre-pandemic reported an increase in hours. Caregivers spent an average of 20 hours per week providing care before the pandemic; this rose to an average of 28 hours at the height of the pandemic. In addition, said Goble, caregivers took on new roles and responsibilities, with increases in providing emotional support, housekeeping/maintenance, and personal hygiene. The rapid pivot to telehealth also gave caregivers the new or expanded role of managing telehealth appointments; 67 percent of U.S. caregivers reported managing technology for their loved one. Goble noted that in addition to usual caregiving activities, caregivers may have also had to spend time on other responsibilities, such as helping children with remote school.
These new and expanded roles during the pandemic—as well as the pandemic itself—have strained caregivers and led to increases in depression and anxiety, suicidal ideation, and substance use, said Goble. The Caregiver Action Network (CAN) sought to make an impact during these extraordinary times, and to shift their usual programs to address new challenges. One program, said Goble, is called Blueprint for Families of Loved Ones with Mental Health Issues.1 This is a website for family caregivers of loved ones with mental health issues, and it addresses six major areas, including: connecting with other caregivers, managing medications and
___________________
medical care, as well as taking care of one’s own health. Goble said that helping caregivers prioritize their own mental health is critical, and the program uses screening to help caregivers take a step back, assess, and reach out for help. Another program is the Caregiver Help Desk, which offers free support to family caregivers across the country; caregivers can talk with experts via phone, email, or chat and can discuss challenges and get connected with local and community-based resources and services. A new CAN program, said Goble, is the Community Care Corps, which will foster innovative models in which local volunteers assist family caregivers, older adults, or persons with disabilities with non-medical care in their own homes. This type of support is essential for people to be able to maintain independence, she said, and is funded through federal grants.
PAID PARENT CAREGIVING
Taking care of a child with disabilities is work, said Shasta Kearns Moore (Medical Motherhood). Performing tasks such as tube feedings, diaper changes, and managing environments takes additional effort, time, and labor. Parents often sacrifice work and sleep for these duties, she said, and may be forced to survive off of low incomes or public assistance programs. The intersection of poverty and disability starts early and has devastating long-term effects. As the mother and caregiver to two disabled children, Kearns Moore emphasized that the work of caretaking is ever-present, regardless of whether or not there is a paid caregiver. Many states offer in-home caregiver programs for children, but these programs were designed for adults and do not necessarily work well for families of young children. Kearns Moore said that families need the option to employ the best-qualified and most readily available caregiver—the child’s parents.
During the pandemic, CMS temporarily allowed states to allow parents or guardians to serve as their child’s hired caregiver, said Kearns Moore. This temporary arrangement (which was carried out under an Appendix K or 1135 waiver) expires when the Public Health Emergency ends. There are myriad benefits to this arrangement, said Kearns Moore. Children get their best-qualified caregiver, as parents are nearly always the expert on their own child’s health needs. Parents are given the respect of being a paid member of the team. One mother, said Kearns Moore, said that being paid for her caregiving work helped her escape a “victim mentality” she had had for 15 years. Paying parents for caregiving can break the poverty cycle and tax dollars provide immediate support for the child as well as financial support for the family. States get a solution to labor shortages: fewer families compete for the small number of outside caregivers who are qualified and available, while parents get experience in a potential new career path. A survey in Oregon found that nine out of 10 children whose families participated in
this temporary arrangement had fewer mental and physical health problems, hospitalizations were dramatically reduced, and there was less reliance on public assistance programs, Kearns Moore said.
Moving Forward
Many states participated in paid parent caregiving arrangements during the pandemic, and some have permanent programs, including Colorado, California, Arizona, and Minnesota. While there is broad interest across the nation in making these programs permanent, said Kearns Moore, there is also resistance to changing the status quo and established flows of money. There is a need to invest more money in paid parent caregiving to reduce the need for institutional care and family wrap-around services, said Kearns Moore. Children and families need the flexibility and support, and these programs need to be fully funded in order to ensure that promised services are delivered. For example, Oregon children were only able to use half of the hours that they were awarded; she said this created a “mirage of services” and forced already-stressed out parents to spend time and energy to fill the gaps. Paid parent caregiving could be supported and permitted through Medicaid waivers similar to those used during the pandemic, or by issuing clearer guidance that parents are already allowed this flexibility under 1915(c), 1915(k) and 1915(j) as long as the parent is not also the legal representative. Kearns Moore stressed that there is a need to ensure that single parents also have this option. In addition, Title V funding could be used to convene discussions among stakeholders, educate and disseminate research, and provide staff support to promote policy change.
For further information, Kearns Moore shared several resources with workshop participants, including:
- Oregon Advocates for Equitable Disability Services proposal on parent-caregivers;2
- National Academy for State Health Policy report on state plans for paid family member caregivers;3
- Kearns Moore’s Medical Motherhood blog;4 and
- State-by-state information on children’s Medicaid waiver programs.5
___________________
2https://drive.google.com/file/d/1cNoIl6IPFqeT_8gPWKwm85HQjXoLqNBU/view
3https://www.nashp.org/wp-content/uploads/2021/01/Family-Caregivers-for-CYSHCN-PDF-1-15-2021.pdf
ENHANCED MEDICAID FUNDING
One of the key strategies for serving disabled people and their families is to provide services closer to home, said Caprice Knapp (State of North Dakota Medicaid). For example, children and young adults with severe autism may be able to be served in the community or in a residential facility. The American Rescue Plan Act made enhanced funding available to state Medicaid programs for home- and community-based services, said Knapp, and states had twenty days to submit a plan that estimated the amount and detailed how funds would be spent. CMS described general ways that funds could be used, including expanding eligibility, offering more services, making capital investments, supporting the workforce, and addressing social determinants of health. States have until 2025 to spend the funds, said Knapp.
On average, these funds will provide an additional $2,604 per beneficiary, for an additional $25 billion in spending overall. In North Dakota’s proposal to CMS, the state estimated an expenditure of $31 million, with 50 percent toward workforce, 21 percent toward pilot programs, 15 percent toward transitions, and 14 percent toward infrastructure. Workforce money will be used for recruitment and retention bonuses, start-up grants for new service providers, and consultants to review and revise the training program for Qualified Service Providers (QSPs). Pilot programs will be launched in multiple areas, including flexible transition supports, rate innovations for QSPs, and in-home consultations for behavioral needs. For example, said Kearns Moore, the state will explore innovative ways to pay personal care attendants according to the level of care provided, and/or paying more for night and weekend care. As part of its commitment to providing services closer to home, North Dakota plans to spend some of its funding on improving transitions. For example, the state will explore ways to pay for transitions within home and community settings, ways to transition clients away from facilities and back to the community, increasing options for families, and enhancing payments for things like assistive technology, respite, and non-medical supports. Finally, said Kearns Moore, infrastructure funds will be spent on building a care connect platform that will match personal care attendants with the needs of clients, improving navigation services for housing, and making Internet tools and sites more user-friendly.
HOME-BASED CARE FOR CHILDREN IN FOSTER CARE
There are over 400,000 children in foster care on a given day, reported Rebecca Seltzer (Johns Hopkins University School of Medicine, Berman Institute of Bioethics), and at least one in four of these children have a
diagnosed disability. Children with disabilities in foster care, compared to foster children without disabilities, are more likely to have placement instability, more likely to have a prolonged stay in foster care, more likely to be placed in congregate care settings, and less likely to achieve permanency (e.g., reunification, adoption). There were several changes made during the pandemic that were aimed at supporting foster children; Seltzer highlighted three that could be carried forward to improve outcomes for this population: improving access to medical foster parent training, linking families to housing resources, and physician home visits.
Medical Foster Parent Training
Recruiting parents to care for children with more complex needs is a long-standing challenge, said Seltzer. The lack of available medical foster homes results in these children waiting weeks, months, or even years in the hospital when not medically necessary, or being placed in unskilled foster homes, group homes, or long-term care facilities. It is critical to recruit and train more medical foster parents, she said, and the medical foster care training program in Florida may be a model for doing so. Before the pandemic, the Florida Department of Health held multi-day, in-person trainings that moved from county to county. The training and onboarding of medical foster parents was often delayed as potential parents waited until the training was in their area. During the pandemic, Florida shifted to a hybrid program that combined asynchronous virtual training modules with live virtual office hours to review material and validate understanding. Following completion of the modules, trainees took an exam to demonstrate proficiency, then underwent an in-person skills assessment at the local program office. Using this model as a starting point, said Seltzer, there is enormous opportunity to develop a best practice medical foster parent training curriculum with virtual didactic modules, virtual scenario-based simulation training, and in-person skills assessments. Once curriculum and technology platforms are developed and pilot tested, the training could be expanded to medical foster programs across the country using train-the-trainer approaches. This would standardize the quality of training, save training costs, and increase access to training, said Seltzer. Funding sources to consider for the development of this type of program include federal and state child welfare funding (e.g., Title IV-E, Title V), partnerships with health systems that would benefit from fewer hospital stays while awaiting placement, Medicaid, and private foundations. When developing and scaling up a hybrid training program, Seltzer said that equity and local context are critical to keep in mind. For example, potential foster parents in rural areas may face barriers in accessing online trainings.
Housing Resources
Housing instability has important and unique implications for the care of children with disabilities, said Seltzer. For children with disabilities entering foster care, inadequate housing is a reason for entry in around 10 percent of cases; inadequate housing can also contribute to placement instability and serve as a barrier to reunification. The pandemic exacerbated financial challenges, said Seltzer, and led to housing instability for some biological and foster families.
In 2019, a program called Care 4 Kids in Wisconsin began screening families for housing concerns, and connecting these families with housing resources. A housing navigator program linked families with legal assistance to avoid eviction, helped families fill out housing voucher applications, and/or helped them find rental homes that would accept vouchers. The program also covered the rent for a small percentage of families as they waited for a voucher or saved up to be able to pay their own rent. This program, said Seltzer, has improved foster care outcomes, has helped biological parents reunify with their children, and has shown significant cost savings for the state. Supporting and expanding these types of programs is a critical step toward promoting home-based care for children with disabilities, she said, and potential funders for programs include child welfare prevention services programs, the Department of Housing and Urban Development, and Medicaid. For example, some states are currently using Medicaid waivers to deliver housing-related support services to individuals with disabilities (Atkeson, 2021).
Physician Home Visits
Children with disabilities in foster care require timely and frequent medical care, said Seltzer, but during the pandemic many families were scared to bring their children to in-person visits. New caregivers are often unfamiliar with the child’s complex medical needs, and health visits are an opportunity for caregivers to learn about their child’s care, ask questions, and receive support. To address these needs during the pandemic, a program called New Alternatives for Children began offering in-home physician visits for children with disabilities in foster care in New York City. Seltzer says that these home visits not only provide a safer and more convenient alternative to office visits, they also allow providers to observe the home environment and troubleshoot challenges in real-time. Foster children with disabilities would be well-served by expanding these programs, said Seltzer, but changes to the current reimbursement system would be necessary to make this feasible.
In closing, Seltzer stressed that while improving home-based care for foster children with disabilities is critical, there is a need to simultaneously
promote programs that reduce the risk of maltreatment and prevent the need for foster care by strengthening families to be able to care for their own children in their own homes.
DISCUSSION
Jones led a discussion session with the panelists, asking her own questions and conveying questions from the audience.
If you could be granted one policy or program wish, what would it be?
This is a difficult question, said Goble, because the needs of family caregivers are so diverse. Goble noted that one thing that many caregivers struggle with is the question of “now what?” When their child is diagnosed or has significant health challenges, the caregiver is not sure how to get the information they need, build a support system, and put together a care team. Goble said that her one wish would be to have a system that meets caregivers where they are and connects them with programs in their communities to help them navigate both the long-term and the day-to-day challenges of caring for a child with disabilities. Foster offered two wishes. In the short-term, finding avenues to pay and ensure training for family caregivers is critical for mitigating the impact of the workforce shortage and for recognizing the work that families are doing. In the longer-term, Foster called for logistical and financial commitments to developing metrics about home- and community-based care; these metrics need to be developed in collaboration with patients and families so that investments in healthcare are for things that actually matter to families. Kearns Moore said that her wish would be that parents could be paid to be the caregiver of their child with disabilities; she suggested that this would lead to a huge reduction in the costs of wrap-around benefits and public assistance programs, and would result in better care and healthier happier children. Seltzer encouraged a “housing first” approach, noting that families caring for a child with disabilities need to be able to do so without worrying about paying the rent. Home-based care is only possible for families who have a home, she stressed. Knapp wished that instead of having to apply for waivers, there was a streamlined process for meeting children’s needs and getting them the care they need.
What stakeholders need to be brought to the table to discuss home care policies?
Parents of young children need their voices heard, said Kearns Moore. These parents are often just trying to survive day-to-day, so it may not be easy to get them at the table, but it is critical that we find ways to hear their perspectives and their needs. Goble added that other family
members—including grandparents and siblings—are important to bring to the table. Every family situation is unique and has a different set of needs, supports, and barriers, she said, and broadening the table to include other family members broadens the scope of perspectives. Knapp said she would like to see more payers at the table; she noted that Medicaid often serves as a second payer after a family’s commercial insurance and said it would be helpful to be able to have discussions with all of the payers of services. Foster summed up by saying that conversations need to include “everybody from who’s paying, to who’s delivering, to who’s experiencing” the services, otherwise perspectives are missed.
How can pandemicera programs and policies be made sustainable over the longterm?
Many of the solutions that have been proposed during this session are cheaper than institutional or hospital-based care, said Foster. In addition, solutions such as paid parent caregiving reduce the stress on the workforce and reduce the impact of staff turnover. These solutions have sustainability and affordability built in, she said, but will require an initial investment in logistics and organization. Knapp added that while many healthcare practices save money in the long-run (e.g., preventative care), payers are often reluctant to pay upfront because they may not experience the savings. However, the population of disabled individuals typically stays with Medicaid for a long period of time, which presents an opportunity to demonstrate and realize these cost savings. Kearns Moore emphasized the importance of ensuring that programs are family-friendly and tailored to their actual needs. When considering new services or new approaches, she said, we need to be careful to not be simply adding more people to interact with and more boxes to check. Being an end user of these programs can be overwhelming, and it is critical to consider the family experience.
Could medical foster parent training be tailored for use by family members of loved ones with disabilities?
Now that these virtual platforms and programs have been developed, said Seltzer, there is no reason not to expand the audience. It would make sense, she said, to spend time identifying the most universal, high-quality materials and didactic methods; developing a standardized approach would save effort, time, and money.
