Letter: Medicaid Supports Home-Based Caregivers

Caregiving Challenges Highlighted by Disabled Individuals in America

Living with Limb-Girdle Muscular Dystrophy presents numerous daily challenges, primarily dependent on the support of caregivers for routine activities. For some, like Brian Jarvis, whose wife Erin plays a pivotal role in providing care, this support enables a semblance of independence. Despite this, the caregiving necessity often goes unnoticed in broader societal conversations about disability and caregiving.

For individuals with disabilities requiring significant assistance, the daily tasks of rising from bed, dressing, or transferring to a wheelchair are monumental undertakings. Brian Jarvis illustrates this reality, noting that when Erin is unavailable, he must seek additional caregiving help, which can be prohibitively expensive. At rates between and per hour, the financial burden of hiring professional caregivers accumulates rapidly. This situation underscores a critical gap in the system designed to support disabled individuals, particularly those holding full-time jobs.

Medicaid serves as a lifeline for millions of Americans with disabilities, yet proposed cuts in Congress threaten to compromise access to essential home-based care. Strained by stringent income limits, many disabled individuals find that earning a full-time wage can disqualify them from important benefits. Moreover, private insurance policies typically do not encompass caregiving costs, leaving families to shoulder the financial load themselves or rely on unpaid family assistance. This reliance can introduce significant emotional and physical stress on both caregivers and those they support.

Erin Jarvis is among the estimated 53 million Americans providing unpaid care for family members who are chronically ill, disabled, or elderly. The strain on caregivers, particularly those who cannot afford private assistance, amplifies an already dire situation. Waiting lists for Medicaid’s Home and Community-Based Services (HCBS) are extensive, with 88 percent of individuals on these lists reporting disabilities. Many are left waiting, often in urgent need of services that could improve their quality of life.

In advocating for change, Brian urges Congress not to consider cuts to Medicaid but rather to expand access to essential in-home care services. Updating outdated income limits could alleviate pressures on thousands of families. Investing in Medicaid and the broader system of home-based caregiving is not only a compassionate approach but also an economic imperative, improving the well-being of caregivers and care recipients alike.

As lawmakers consider the future of healthcare funding, the voices of disabled individuals and their caregivers must be prioritized. Protecting access to Medicaid is critical to ensure that the needs of millions are met before the current system falters under the weight of budgetary constraints. The time for action is now.