9
Looking Forward
The pandemic challenged us in so many ways, said Houtrow, and the issues that faced children with disabilities with their families were profound, long-reaching, and will have impacts well beyond the end of the pandemic. The pandemic demonstrated deep inequities and systemic challenges for many groups; these were acutely felt by children with disabilities and their families. At this workshop, she said, speakers have identified changes that need to be made in the short- and long-term, as well as transformational changes that are necessary to address the underlying systemic issues that have been made so much starker by the pandemic. Houtrow offered her reflections on common themes among the presentations, and then identified action steps that could be taken in order to improve the health and wellbeing of children with disabilities moving forward.
THEMES
Houtrow identified seven themes that emerged from the presentations and discussions: engaging people with lived expertise, partnerships and coalitions, flexibility, technology, children with disabilities have rights, coordination and communication, and political and social determinants of health.
Engaging People with Lived Expertise
The idea of engaging people with lived expertise was emphasized by multiple speakers, said Houtrow. Lived expertise needs to be incorporated
through formal partnerships, such as inclusion on advisory boards, and people with lived expertise need to be thought of as leaders in the field. People need to be engaged at every step of the way, not as an afterthought, she said, with formal relationships in place from inception to implementation to evaluation. From a health equity lens, there are some families who have a limited capacity to participate, but it is essential that their needs are still recognized, their perspectives valued and respected. It is important to address the needs of people from multiply marginalized identities and understand the intersection between different identities. When we don’t engage with people with lived expertise, she said, we fall back on assumptions about the value or quality of life of people with disabilities, and we set up to perpetuate discrimination and oppression. Engaging people with lived expertise, said Houtrow, can be summed up in the disability justice movement cry, “nothing about us without us.”
Partnerships and Coalitions
Nearly all speakers mentioned the importance of partnerships and coalitions, said Houtrow; some highlighted existing structures that need to be supported while others called for new coalitions and working relationships between entities such as schools and public health systems. There was also a need identified to undo structural hierarchies, she said. Many speakers suggested that Title V agencies and/or the Maternal and Child Health Bureau could play an important role in bringing together stakeholders and creating a space to collaborate.
Flexibility
Speakers discussed the critical need for flexibility in multiple areas, said Houtrow. First and foremost, we heard about the need for flexibility in telehealth. Speakers also discussed flexibility in terms of administrative roadblocks, such as prior authorization requirements or state-to-state licensing rules. Flexibility was mentioned in the context of Medicaid enrollment and programs, many speakers commented that Medicaid waiver flexibilities should be extended. Flexibility also arose in discussions of the workforce, and the need to be flexible in training, and the importance of allowing families to be paid for the work they provide. Houtrow emphasized that these calls for flexibility should not be considered a “kindness” or a temporary solution to a specific circumstance, but rather as an integral part of ensuring the rights and dignities of children with disabilities and their families.
Technology
During the pandemic, telehealth and other technological applications were very valuable to many patients. However, said Houtrow, it was also clear that there was a big problem with equitable access to these technologies. Speakers suggested several approaches for improving equity: making broadband access a public good, continuing and expanding payments for telehealth services, and ensuring that families’ preferences about technology use are recognized and respected. There is not a one-size-fits-all solution, said Houtrow, and it is essential to think about technology as an equity issue.
Children with Disabilities Have Rights
One theme that arose repeatedly was the idea that children with disabilities have rights that are codified in law. It is critical to ensure that these rights are respected and that children receive the accommodations and services that they are entitled to, she said. Unfortunately, many speakers spoke of unfunded mandates, lack of clarity around children’s rights, and lack of adequate training in some areas. For example, while children with disabilities are guaranteed a free appropriate public education, the pandemic disrupted many services for children and the educational opportunities that were available (i.e., virtual school) were not always appropriate. In both time of crisis and times of calm, said Houtrow, it is critical that those who are tasked with ensuring the rights of children are both prepared to do so and have adequate funding and training to do so. Specific suggestions made by speakers were to clarify Early and Periodic Screening, Diagnosis, and Treatment care coordination benefit, and increase the Federal Medicaid Assistance Percentage.
Coordination and Communication
Speakers discussed the need for improved coordination and communication in multiple areas, said Houtrow. The main theme, however, was to ensure that policies and programs are focused on what children and families need. To do so, it is important to have the right stakeholders at the table, including the voices of children and families. Several speakers noted that the Maternal and Child Health Bureau and Title V agencies could help foster across-sector coordination and coordinate services, particularly during disasters or emergencies.
Political and Social Determinants of Health
Many of the challenges that children with disabilities and their families experienced during the pandemic can be traced back to political and social
determinants of health, said Houtrow. There were multiple discussions about the importance of food security, adequate housing, and economic stability, and how these issues impact families. Houtrow said that “we heard loud and clear that kids aren’t getting what they need” in terms of access to healthcare due to barriers, red tape, and perverse incentives. Houtrow shared the story of her battle to get wheels for the wheelchair of a child who was paralyzed. There are ways to reduce the complexities of accessing programs, to simplify the process, and to improve access to all families.
ACTION STEPS
Houtrow said that while there are many ideas for how to improve the well-being of children with disabilities, “we do not need to make things more complicated.” Speakers repeatedly said that there is a need to make programs and policies simpler, more straightforward, and easier to navigate. Houtrow offered suggestions for improvement in four areas: poverty, healthcare coverage, education, and discrimination.
Poverty
Houtrow offered several specific policy suggestions for improving the financial stability of children with disabilities and their families and ending the cycle of poverty:
- Convert the Child and Dependent Care Tax Credit to a fully refundable credit that concentrates benefits to the families with the lowest incomes;
- Increase the Supplemental Nutrition Assistance Program;
- Increase housing vouchers;
- Expand the Earned Income Tax Credit to increase payments;
- Reduce burden of accessing programs that support economic stability through single-point-of-entry;
- Eliminate Sub-minimum wage;
- Extend FMLA coverage;
- Expand Vocational Rehabilitation programs (partnering with schools and Title V services);
- Make sure home and community-based services are covered and available for all who need them;
- Recognize the extra cost of having disabilities and pay families; and
- Revolutionize Supplemental Security Income.
Healthcare Coverage
One approach for improving healthcare coverage for children with disabilities, said Houtrow, is federalizing Medicaid. This has several benefits, she said. It eliminates state-to-state variations in coverage and enrollment requirements. It eliminates the need for children to be covered by private insurance, which often ties a parent to a specific job because of the need for insurance. It destigmatizes Medicaid because it allows all children to be covered, regardless of income. It eliminates churning and allows families to maintain consistent coverage. Federalizing Medicaid also massively decreases administrative burdens. In addition, she said, it is critical to pay providers appropriately for their services, including preventative services, care coordination, team-based care, and addressing family needs. Another approach to garnering resources may be to authorize people with disabilities as a “health disparities population” under 42 USC Section 285t(d)(1).
Education
Children with disabilities tend to be underserved in education, said Houtrow. There is a need to realign funding to eliminate the divide between rich and poor schools so that all children can have their needs met. To best serve children with disabilities, schools should work in collaboration with other sectors and programs that serve children, she said. Children with disabilities have the right to a free appropriate public education, and fulfilling this mandate may require more resources and using evidence-based strategies to promote inclusion. Students need access to mental healthcare, and behavioral issues need to be viewed as behavioral issues rather than as discipline problems.
Discrimination
In all of this work, said Houtrow, it is critical to use an equity lens and to eliminate and mitigate the impact of discrimination wherever possible. This means including individuals who experience marginalizations at every stage, and prioritizing their perspectives and needs. She offered a few ideas for reducing discrimination:
- Assess one’s own implicit biases;
- Create and assess programs/interventions through a health equity lens;
- Involve the people who are being marginalized in the planning, creation, implementation and assessment of programs and services;
- Leverage medical-legal partnerships; and
- Teach professionals about ableism and how it impacts how they evaluate and treat/address the needs of children with disabilities.
CLOSING THOUGHTS
At the end of the workshop, Houtrow put together a word cloud of topics that were frequently mentioned at the workshop (Figure 9-1). She invited planning committee members to offer a brief major theme or takeaway message:
- Myrick: This work needs to be done with the individual and family, not to or for the individual and family. The pandemic highlighted how capable and innovative families can be when things need to be done.
- Strassfeld: There is a need to more fully recognize and understand the contributions of parents in the care of children with disabilities.
- Jones: People with disabilities each have their own unique experience, and many experience multiple and multiplicative identities and oppressions.
- Tassé: The pandemic has highlighted the disparities in access to technology, as well as the promises and benefits of telehealth. Moving forward, we need to view access to the Internet not as a utility but as a basic essential service that is necessary for healthcare, education, and work.
SOURCE: Houtrow Day 3 presentation (2022), slide 24.
Houtrow closed by saying that this workshop has shown that there are ample examples of successful programs, services, and supports that should be continued to help improve the lives of children with disabilities and help them thrive in our communities. Now, the challenge is to “all row in the same direction to achieve our transformational goals.” She adjourned the workshop.
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