A first-of-its-kind needs assessment reveals how insurance, inaccessible clinics, and system failures deny people with mobility disabilities timely, preventive, and equitable care, and outlines clear, achievable policy solutions.

Across New York State, people with mobility disabilities are navigating a healthcare system that was not built to serve them. Despite federal and state protections, access to basic medical care remains limited, fragmented, and exhausting.

The Multi-Layered Maze of Navigating the Healthcare System for People with Mobility Disabilities in New York, released by Independence Care System (ICS), documents how systemic barriers compound, forcing people to delay care, ration appointments, and manage serious health conditions without adequate support.

This report makes clear: these barriers are not inevitable. They are the result of policy choices, and they can be changed.

What the Report Documents

Drawing on focus groups with people with mobility disabilities and healthcare providers across New York City, Long Island, the Hudson Valley, and Central New York, the report identifies a multi-layered maze of barriers:

• Insurance plan limitations that act as the primary gatekeeper to all services
• Unmet social care needs, including home care, transportation, and mobility equipment
• A lack of accessible clinics, including exam rooms and diagnostic equipment
• A shortage of disability-competent providers, particularly outside New York City

Together, these barriers restrict access to preventive care, disrupt continuity, and undermine health outcomes.

Lived Experience, Not Abstraction

Participants described the daily toll of navigating systems that fail to account for their realities.

• Without sufficient home care, medical appointments are unreachable.
• Without reliable transportation, a single visit can consume an entire day.
• Without timely wheelchair repairs, people are confined to their homes for months.

Providers echoed these concerns, describing insurance denials, down-coding of equipment, and administrative burdens that override clinical judgment.

Care Coordination: A Proven Path Forward

Across all focus groups, high-quality, disability-competent care coordination emerged as the most effective way through this maze.

When care coordination is knowledgeable, holistic, and independent, it:

• Prevents avoidable health crises
• Reduces administrative burden
• Preserves continuity of care
• Helps people access accessible clinics and disability-competent providers

Participants consistently cited ICS as an example of this model working as intended.

Why Policy Action Is Needed Now

As New York continues its commitment to community integration under the Olmstead mandate, this report shows that healthcare access remains a critical gap.

New York State lawmakers must co-sponsor, champion, and pass:

• Senate Bill S1918
• Assembly Bill A9205

Together, these bills would establish the first statewide Health Home program designed specifically for adults with physical disabilities, codifying a care coordination model that directly addresses the barriers documented in this report.

This is a practical, evidence-based opportunity to improve outcomes, reduce preventable crises, and support independent living.

Take Action

Download the full report, here.

For Policymakers

• Review the findings
• Co-sponsor, champion, and pass S1918 and A9205
• Request a briefing with ICS

For Providers and Partners

• Learn how ICS’s disability-competent care coordination supports better health outcomes
• Partner with ICS to support shared patients