Center for Child and Adolescent Health Policy

Employee Benefits Study

About the Study

Overview

Children and youth with special needs include those with physical, neurological, developmental, emotional, and mental disabilities and chronic conditions. These broad categories include spina bifida, deafness, Down syndrome, AD/HD, autism, cerebral palsy, mental retardation, cystic fibrosis, asthma, childhood cancer, Asberger Syndrome, learning disabilities, blindness, depression, and genetic disorders, in addition to many others. These children and youth are our nieces and nephews, our grandchildren, our neighbors, our friends, our sons and daughters.

Children and youth with chronic health conditions and disabilities are uniquely vulnerable to limitations on adequate and appropriate health insurance and access to needed services. Their families can face financial hardship as a result of their health needs. Additionally, their parents may face threats to their own health and challenges to maintaining employment. While public benefit programs exist at both the federal and state level to support children with special health care needs and their families, the private sector also serves as a crucial link to employment-based health insurance and other beneficial supports. Extensive attention has focused on the role and effectiveness of public benefit programs in meeting the needs of these children and their families, yet little attention has been paid to the private sector’s role in this regard.

With support from the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, (Cooperative Agreement 1U93MC00183), the Center for Child and Adolescent Health Policy at the MassGeneral Hospital for Children conducted a study to examine employer-sponsored benefit systems and workplace supports as they relate to employees who have children with special needs. Begun in 2001 and completed in 2006, this project, the Employee Benefits Study for Children with Special Health Care Needs, had three primary goals:

To examine how current benefit structures help employees who have children with special health care needs,
To determine how employers and purchasers understand the needs of employees caring for children with special health care needs,
To identify and demonstrate opportunities for improvements in workplace supports and employment benefits for employees caring for a child with special health care needs.

The study was a collaborative effort between:

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Methodology

During the first phase of the project, the research team interviewed key informants, employers, union representatives, and parents in four U.S. Cities. Forty-five employers and union representatives in Boston, Cleveland, Miami, and Seattle were interviewed to gather information relating to employers’ and purchasers’ perceptions, experiences, and practices relating to workplace supports and benefits for employees raising children with special needs.

Interviews were also conducted with key informants and experts in the fields of employee benefits, employment and benefits law, health insurance, and work-life programs to seek advice and additional information about the key study questions. Finally, focus groups with parents were conducted to better understand the experiences of working parents who have children with special needs.

In the second phase of the project, strategies for improving access to information, resources, and support were demonstrated in three companies: Ernst and Young (Cleveland, OH), Progressive Corporation (Cleveland, OH), and Raytheon Company (Waltham, MA). During this phase, members of the study team collaborated with key representatives from each company to identify, develop, and pilot specific initiatives designed to increase awareness about employee needs and to improve access to and utilization of benefits for employees who have children with special needs.

These strategies included:

Establish a Parent Network of employees, spouses/partners, and other family members of children and youth with special needs through which employees shared information and gained new information about company benefits, public benefits, and community-based services
Conduct at-work seminars during which information about community, state, and federal benefits, resources, services, and programs was provided
Disseminate information through the company Intranet regarding general awareness about children and youth with special needs and optimizing use of company benefits to best meet the family’s needs
Conduct an assessment of information and referral resources provided through a company’s work-life/EAP vendor regarding children and youth with special needs

These demonstration efforts:

Illustrate the potential for improvements in employer-sponsored benefits and supports
Identify potential barriers to access and utilization of these benefits by employees who have children with special needs
Describe strategies for addressing these barriers
Now in its final phase, scheduled for completion in May 2006, the project continues its efforts to increase awareness among employers and benefit providers about the needs of families who have children with special health care needs and to expand the resources developed during earlier phases of the study.

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Findings

Analyses of the data collected during the first phase of the project indicate that many structures and benefits helpful to employees who have children with special needs already exist in the workplace. For example, all companies interviewed offered comprehensive health insurance coverage. Work-life programs were also typically provided, with variations relating to specific work-life benefits offered and the sector of the workforce eligible to use them.

The major findings were:

Awareness: Employers and purchasers are generally not aware of the prevalence of childhood chronic conditions or their impact on working parents and consequently the workplace.

Corporate Culture and the Economic Environment: Corporate culture, the benefits philosophy and strategies of the employer, the industry and demographics of the workforce, and the broader economic environment influence the supports and benefits employers offer.

Health Insurance Benefits: Children with special needs particularly need health insurance, yet these benefits are the most vulnerable to reductions and limitations, particularly benefits relating to specialized treatments and long-term care services.

Work-life Benefits: There is extensive evidence supporting the positive impacts of work-life programs on worker productivity, presenteeism, and retention, resulting in positive returns on investment. For working parents caring for children with special needs, these work-life supports and programs can be particularly crucial.

Of primary importance are:

Flexible work arrangements such as flexible schedules and telecommuting, and compressed schedules
Flexible use of leave time

Other work-life benefits that can also be helpful are:

Parent networks (peer support groups, affinity groups) through the workplace
Information and referral to appropriate community services and resources, particularly child care and special education advocacy/assistance
Information about public programs such as Title V, Early Intervention, and Medicaid
Better information about existing employer-sponsored benefits and how to access and use them, e.g. how to better utilize Flexible Spending Accounts for medical and dependent care expenses; how to compare company-offered health plans

Other initiatives that can be helpful are:

Awareness training for supervisors on the relationship between children with special needs and the workplace and the implications for their supervisory responsibilities
Strategies for creating a supportive work environment
Employee needs assessment regarding health insurance, flexible work arrangements, and other work-life benefits.

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Implication of Findings

Many employers already offer benefits and supports helpful to employees caring for children with special needs. Therefore, these findings mean that improvements in benefits and supports do not necessarily indicate the need for investment in new benefits. Rather, increased awareness about the needs of these employees and how they can use existing workplace infrastructures and benefits could provide important support to these employees while maximizing a company’s investment in these benefits. There are also many local, state, and federal public and private resources that can be helpful. In fact, these resources provide critical support to many families who have children with special needs. Yet, employers are often unaware of these programs and services. Providing employees with Internet links to these program websites is just one example of a benefit that can be provided through the workplace at little or no cost. The initiatives piloted with the three employers demonstrate the range of programs that employers can implement to better support employees who have children with special health care needs, often with minimal investment of resources.

The project has produced several products (available on this website) to increase awareness about the work-family issues for employees who have children and youth with special needs and to provide guidance on how to improve supports through existing benefit systems and new workplace support options. These resources may help employers, benefit providers, employees and their families better understand and use employer-sponsored benefits and other workplace supports.

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Project Contact

Karen A. Kuhlthau, PhD
Associate Director
Center for Child and Adolescent Health Policy
MassGeneral Hospital for Children
50 Staniford Street, Suite 901
Boston, MA 02114

617-726-1885
KKuhlthau@Partners.org