Home or Nursing Home?
Benincasa, Robert, Shapiro, Joe, Investigative Reporters and Editors, Inc. The IRE Journal
NPR finds wide variations in care for the disabled
The story started with a simple question about a decade-old U.S. Supreme Court decision. The decision, Olmstead v. LC, said people with disabilities have a civil right to remain in their communities while getting long-term care.
The court ruled in 1 999 that institutionalizing people when they could reasonably be served in a less-restrictive setting was discrimination under the Americans with Disabilities Act. So, we wondered, did that "right" really exist in practical terms, or did the law amount to an unfulfilled promise?
We set out to find, through interviews and anecdotes, as well as data and documents, whether disabled persons were getting the care they needed, and could receive, in their homes and communities. Or, were they landing in nursing homes?
Reporter Joe Shapiro began looking for stories of the struggles faced by disabled persons straddling the worlds of home-based and institutional care. Computer-assisted reporting producer Robert Benincasa began looking for data.
In Illinois, Shapiro found 20-year-old Olivia Welter, who has lived in her family's home, but needs expensive machines and constant nursing care to stay alive and healthy. We learned that the state program that pays for that care was set to cut off the moment she turned 2 1 - taki ng her out of the envi ronment that had sustained her for her whole life. The state would, however, pay for her to move to a nursing home.
In Atlanta, 87-year-old Rosa Hendrix went to get short-term physical therapy in a nursing home. While there, she lost her apartment, and was consigned to the institutional setting permanently. For her, a housing problem turned into involuntary institutionalization.
Through interviews with advocates and a review of the data, we found that countless younger people - from their teens into their early 60s - were living in nursing homes, wanting to get out. The data on the nursing home population indicated that those ages 31 to 64 were the fastest-growing segment for the past 1 0 years.
One strategy Shapiro used to find people living in nursing homes against their will was to seek out lawyers who represent them. A congressional Iy mandated "protection and advocacy system" funds legal representation in every state, aimed at protecting the civil rights of people with disabilities. The participating lawyers belong to the National Disability Rights Network, the umbrella group for these "protection and advocacy" systems at the state level.
We made a second state map that showed differences in how states spend Medicaid dollars on the elderly and disabled. Some devote more than half the money to community-based care; others spend less than 20 percent in communities, with the rest going to nursing homes.
As a public service, we decided to put the entire database of all facilities, in searchable format, on npr.org. The goal was to allow our audience to find out how well their local nursing home residents could care for themselves without help. Along those lines, we imagined the data could help others who were assessing the pros and cons of particular nursing facilities, as one set of factors to consider.
Publishing the information at the facility level aimed to hold individual providers and states accountable for their nursing home resident populations, and the decisions they had made about who is institutionalized.
For those using our data to do research locally, the indicators provided a starting point to find out more about the quality of care in local facilities. To help put the information in context, we added a federal quality rating for each home and the date of the census survey. The quality rating data is available on the CMS website in Microsoft Access format. We matched it to the facility census data using the federal provider numbers in both data files.
Our searchable database was to use a state and county search sequence, so Benincasa matched the ZIP codes of the nursing home addresses with counties using a commercial ZIP code-tocounty crosswalkfile. …