August 01, 2012

Why an Illinois Woman Left Her Daughter with Special Needs in Tennessee to Fend for Herself - Part One: National Family Voices Examines the Need for Families to Have Access to Information About Services


Recent news stories have asked why Eva Cameron, a mother of three from Algonquin, Illinois near Chicago, drove her eldest child, a 19-year old girl with severe intellectual disabilities, 500 miles to Tennessee, then left her at a bar and drove away.

Family Voices is a national non-profit that supports Family-to-Family Health Information Centers (F2F HICs, or F2Fs) in each of the 50 states and DC. F2Fs are dedicated to helping families of children and youth with special health care needs (CYSHCN) and disabilities. This story looks at the role F2Fs can play in providing information to parents like Eva Cameron about services available in their areas.

Articles in the Chicago Tribune* reported that Cameron, whose daughter has the developmental understanding of a two- or three-year old, explained that due to her daughter's situation, her family owes $12,000 in bills, she lost her nursing job, and her husband's business has suffered. She indicated she has been rebuffed for more than ten years in her efforts to have her daughter placed in a group home in Illinois. In an interview the CNN's HLN Evening Express,** Cameron stated, "When I didn't get the help I needed from Illinois, someone at the church said, ‘Why don't you go down to Tennessee? They have a good healthcare system.'" CNN reported that Cameron told police Tennessee has the number one healthcare system in the United States, especially for disabled teens and adults.

However, Cameron's belief is apparently incorrect.  When asked whether this perception of Tennessee is accurate, Belinda Hotchkiss, Director of Family Voices of Tennessee, (which is home to the F2F HIC that provides information about available services to Tennessee parents of CYSHCN and disabilities), commented:

"No, not by a long shot. In Tennessee, the Developmental and Intellectual Disabilities Program actually has a very long waiting list of 7,000 people. I work with parents whose children have been on that waiting list for five, ten, twelve years. If we had spoken with Mrs. Cameron, we could have provided her with more correct information about the services Tennessee does and does not have to offer."

This story of a desperate and hopeless mother from Illinois, who took her daughter to another state in search of care, illuminates two critical needs and a strange fact:

  • the need for an adequate system of services to support children and youth with special health care needs (CYSHCN) and disabilities to support children at home and in their communities;
  • the need for easy-to-find, accurate information for parents about the local resources that are available to them, and to their children; and
  • the strange fact that each state has its own complex set of laws, regulations, and services for CYSHCN and disabilities and their families.

Another family expert reiterates the need for these family-to-family linkages of relevant and accurate information.  Faye Manaster, Project Director of Family Voices of Illinois, The Arc of Illinois Family to Family Health Information Center, commented:

"Perhaps if this mother had contacted us and told us about her family's situation, we could have guided and supported her in working with programs and services in Illinois. If she had expressed interest seeking services in Tennessee or any other state, we would have been able to connect her with Family-to-Family staff members in those states, as we do for many families each year. We often advise families seeking to move to another state in order to access better services for their children with special needs to first travel there on a "fact-finding mission", using contact information from us, before making their decision."

Manaster went on to explain that many F2Fs lack sufficient staff resources to do as much outreach as they'd like so that the people who need F2F services can find them. She also said that F2Fs often work together to share information that is needed by parents in one state about resources that might be available to them in another. Federal funding for these centers is currently scheduled to expire in May of 2013.

Cameron's actions are difficult for many people to understand because it seems impossible to imagine or condone abandoning a child. In an August 1 Op Ed in the Chicago Tribune,*** Chicago lawyer William Choslovsky commented:

"After all, what kind of mother would do such a thing? Perhaps one who tried for years - and waited patiently - for services to help her child. Any services. Services the law requires the state to provide. Services that never come, despite promises and waiting lists."

 This extreme choice by an overwhelmed, at-the-end-of-her-rope mother can be better understood by appreciating how difficult it can be for parents to find the critical information they need to access appropriate services and make the most helpful choices for their children.  Janis Guerney, Public Policy Co-Director for National Family Voices, is working to secure funding for the F2Fs going forward. She explained:

"When parents don't have the information they need about where they can go for services, the children suffer. The Camerons' story is a good example. And when the parents don't get accurate information about available services, typically the Medicaid system in the state ends up spending more money in emergency room costs and other interventions that are required when conditions become critical. Again, in some ways this is a good example. Tennessee, and perhaps Illinois as well, has just spent a lot of time and resources to rectify this situation with Eva Cameron's daughter, which might have been better spent helping the family find services that met their needs.

F2Fs actually save the state money by providing parents with relevant, timely information and support that prevents crises. If the Federal government does not fund F2Fs beyond fiscal year 2012, more parents like Eva Cameron will likely be unable to find the information or services they need to prevent critical situations."

For More Information Please Contact:
Melanie Rubin, Director of Communications, National Family Voices, 505-872-4777,
mrubin@familyvoices.org, www.familyvoices.org

Footnotes:

* Articles located at ChicagoTribune.com:

1. "Chicago-area mother says desperation led her to abandon disabled daughter in Tennessee: Algonquin woman says she couldn't cope with 19-year-old's disabilities or mounting cost of caring for her. But not everyone is sympathetic to her plight." By Lisa Black , Chicago Tribune reporter, July 23, 2012
2. "Algonquin woman left in Tennessee bar headed back to Illinois: Severely disabled 19-year-old abandoned by mother to be placed in residential facility." By Lisa Black, Chicago Tribune reporter, July 27, 2012

** News Report on CNN's HLN Evening Express

"Cops: Mom Leaves Mentally Disabled Teen at Bar," July 12, 2012, http://www.hlntv.com/video/2012/07/11/mentally-disabled-teen-abandoned-bar

*** Op Ed in the Chicago Tribune, August 1, 2012, By William Choslovsky, "Condemn a Mother or a System," http://www.chicagotribune.com/news/opinion/ct-perspec-0801-mother-20120801,0,4236847.story?dssReturn