Little Lobbyists Family Alliance Medicaid Messaging & Policy Guidance

Little Lobbyists Family Alliance is the only national family-led, disability-forward nonprofit organization advocating for all medically complex and disabled children. Our work focuses on access, inclusion, and full integration in health care, education, and all aspects of life. We center disabled and medically complex people and their families, including family caregivers, and recognize that some parents and family caregivers may also be disabled.

What is Medicaid?

Established in 1965 as part of the Social Security Amendments, Medicaid provides health insurance to 83 million low-income Americans, with a federal budget of around $880 billion. Under the Affordable Care Act, some states opted into a Medicaid expansion program that extended coverage to anyone earning up to 138% of the federal poverty level. Two-thirds of state funding comes from the federal government. Each state runs their own Medicaid program, such as Medi-Cal and the Oregon Health Insurance Program.

States must provide federally-mandated Medicaid benefits such as physician services, laboratory services, and transportation to medical care. They also have the option to provide benefits such as private-duty nursing, hospice, and dental services. States making up budget shortfalls may cut these “optional” services, which including the home and community-based services (HCBS) disabled and medically complex people need to live in their communities, instead of institutions. Many HCBS programs have long waitlists, which is a policy choice.

Tips for messaging effectively about Medicaid

Medicaid is popular. 77% of Americans overall have a positive view of the program, including 67% of Republicans. (Kaiser Family Foundation: Medicaid in the United States, May 2025)
More than one million Americans could lose their jobs due to Medicaid cuts. This ripple effect will spread throughout state economies, shrinking business revenues and supply chains, and creating a loss of nearly $9 billion in state and local tax revenues. (Commonwealth Fund, How Potential Federal Cuts to Medicaid and SNAP Could Trigger the Loss of a Million-Plus Jobs, Reduced Economic Activity, and Less State Revenue, March 2025)
Proposals for more aggressive means testing, job loss penalties, and aggressive redetermination will increase administrative burden for recipients; put pressure on already skeletal staffing at Medicaid offices; and cause eligible people to lose their Medicaid coverage.
Cutting or defunding Medicaid will gut the health care system in America. Declining and disappearing Medicaid reimbursements will lead to hospital closures; force health care providers to relocate; and increase cost of care for all Americans. This destabilizes access to health care for everyone, not just Medicaid recipients.
One in four of the 60 million people living in rural America rely on Medicaid coverage, with another 22 percent enrolled in both Medicare and Medicaid. Nearly half of these recipients are children. The promised $50 billion rural health fund cannot offset the funding shortfall of $137 billion. (Kaiser Family Foundation, How Might Federal Medicaid Cuts in the Enacted Reconciliation Package Affect Rural Areas?, July 2025)
Lawmakers should prioritize what disabled and medically complex people are asking for. For example, autistic self-advocates oppose applied behavioral analysis (ABA) and want meaningful supports and services. Focusing on funding cuts for ABA, or describing services that are not ABA under this umbrella, does not serve the autistic community and detracts from services autistics are asking for.
Threatening HCBS undermines our right to liberty and the pursuit of happiness. We deserve to live freely in our communities and experience joy. It also clouds the future for disabled and medically complex people who rely on Medicaid and HCBS.
The GOP’s “fraud” messaging is a pretext for attacking the social safety net in blue states. Most fraudulent activity takes place on the provider, not consumer, side and involves large health care corporations, not direct service providers, who account for less than 1% of monetary judgments. Medicaid is not a cash benefit. There is no incentive for recipients to commit fraud. Provider fraud can include things like upcharging, double billing, and other falsification of billing and records. For every dollar spent on fraud investigations, the government recovers just $3.35.
The federal government’s attempts at holding Medicaid funds hostage in states such as Minnesota to advance its cruel deportation program and punish blue states are illegal and unamerican.
Little Lobbyists advises against making appeals to economic efficiency when discussing Medicaid. The lives of disabled and medically complex people are not subjects of economic debate and health care is a basic human right.

Changing the Narrative

Instead of…	…try
Waste, fraud, and abuse or program integrity	False claims of misusing Medicaid Myths about misuse of Medicaid
Special needs	We say children with disabilities. For education, health care, and other needs and services, say needs or services. Needs are not special.
Applied Behavioral Analysis (ABA)	Services for autistic children Little Lobbyists opposes ABA, which is only one form of service available to autistic people: Be specific about which service you mean when you are discussing autism services and supports
Suffering from/Afflicted with/handicapped	Disabled or medically complex Or, describe a condition neutrally: “She has ALS” “He has a seizure disorder”
Wheelchair bound	Wheelchair user, uses a wheelchair for mobility
Disability-as-metaphor such as blind, crippled, insane, crazy, deaf	Use appropriate descriptors, such as “weakened economy” instead of “crippled economy” or “the voices of self-advocates are being ignored” instead of “falling on deaf ears”
Inspirational, overcoming despite disability	Focus on rights, access, systemic barriers
Treating disability as a niche issue	Disability touches everything: For example, integrate into workforce policy (accessible employment), healthcare (continuity of care), education (inclusive education)
Burden on families, cost to the system	Caregiving is a collective responsibility and joy, not a burden. Do not frame the needs of disabled and medically complex people as burdensome. Instead, say: People who deserve access, investments in community inclusion, support systems
Helping those with disabilities live like normal people	Ensuring disabled people have equal access and opportunity
Safety net	Essential infrastructure
Work requirements	Job loss penalties

A note on language

Little Lobbyists recognizes that when discussing disability, some people may use person-first language such as person with disabilities or person with autism. This reflects the medical model of disability, which foregrounds disabilities and impairments as medical experiences that can happen to anyone.

Others use identity-first language, such as disabled person or autistic person. This reflects the social model of disability, which argues that society chooses to disable people on the basis of their impairments by creating unnecessary barriers. In this model, disability may be part of someone’s identity, like race, gender, or sexual orientation. Some disabled people also view their impairment as an identity, such as autistic or blind people. Others identify themselves as disabled, but use their impairments as adjectives, such as people who have Down syndrome.

Always defer to the language disabled people/people with disabilities use to describe themselves. If you aren’t sure how someone would like to be described, ask them. Avoid using dated or offensive terminology such as crippled, handicapped, or the r-word.