Georgia’s Legislators Can Help Deflect Institutionalization of Children and Youth with Special Health Care Needs

Introduction

This White Paper serves to educate Georgia Legislators and policymakers on the need to support children with disabilities and their families staying together by providing access to home- and community-based services. Programs exist that are designed to ensure all  people who experience developmental and/or psychiatric disabilities are deflected from institutionalization and instead receive services in the most integrate setting, such as the family home, which leads to other benefits of community living such as relationships and employment. Georgia’s General Assembly has authority to mandate that a child’s parents and/or guardian be provided with appropriate and adequate support services in the child’s home prior to allowing funding for an institutional placement such as Intermediate Care Facilities for people wit Intellectual and/or Developmental Disabilities (ICF-IDD) or Psychiatric Residential Treatment Facilities (PRTF). Home- and community-based services protect children from the heightened risk of abuse and neglect of institutionalization.

The Children’s Freedom Initiative (CFI) was established in 2005 to halt the practice of admitting Georgia’s children who experience disabilities into institutions. Since then, CFI has worked closely with families and stakeholders to advocate for access to home- and community-based services so children remain with family or live in another permanent, loving home.

Children with disabilities are being institutionalized in a variety of facilities, including skilled nursing facilities and youth detention centers, and the number of children with disabilities in the custody of Georgia’s Division of Family and Children Services (DFCS) and Department of Juvenile Justice continues to grow.

Access to and the provision of services in the family home ensures children with disabilities receive the necessary supports in a setting that encourage development and the acquisition of life skills that lead to full community integration and more productive lives. Children with disabilities admitted to institutions do not receive this necessary treatment and continue to be at heightened risk for abuse and neglect.

The Mission of the Children’s Freedom Initiative is to ensure that all children live with families in permanent, loving homes – not in nursing facilities, institutions, or other congregate settings.

Children who are Medicaid-eligible have rights:

In 2015, 121,800 of Georgia’s children aged 5 – 20 reported one or more disabilities (Erickson & von Schrader, 2016). The frequency of disability among Georgia’s youth continues to increase as medical innovation makes interventions available that enable children to be born who otherwise would not have been born in the past. Many of these same children lack continuing access to medically-necessary services. 

The Medicaid Act’s benefit program, Early and Periodic Screening, Diagnosis and Treatment (EPSDT), mandates that all children  under age 21 who are Medicaid-eligible have access to and receive medically-necessary services at the amount, scope, and duration as prescribed by the child’s treating physician in order to correct or ameliorate (prevent worsening or the addition of other medical conditions) the child’s condition. (Centers for Medicare and Medicaid Services, 2018). Where Georgia fails to provide a service required by EPSDT, the child’s rights are violated and the child is at greater risk of institutionalization and negative health outcomes. 

Where are Georgia’s children and youth who experience disabilities?

Although family-based supports are preferable, a clinical report from the American Academy of Pediatrics, Helping Families Raise Children with Special Health Care Needs at Home, states that families may consider out-of-home placements when sufficient family-based services are not available (Johnson & Kastner, 2005). Families assume institutional settings provide appropriate, individualized services based on each child’s support needs; instead, children are congregated by age or disability, disregarding specific support needs.

CFI regularly receives information from the State regarding children who are institutionalized. We meet with the children and their families to better understand what led them to consider an institutional setting. As of August 1, 2018, 11 youth under age 22 are unnecessarily institutionalized in skilled nursing facilities in Georgia due to lack of access to home- and community-based services as a result of waiting lists or lack of provider capacity.

Many families report the lack of access to timely and potent crisis services as a barrier to keeping their child at home. As a result, children with disabilities who experience a behavioral health crisis often find themselves admitted to institutions or in direct contact with local police departments rather than with trained crisis personnel. In November of 2018, there were 334 children in the custody of the Georgia DJJ with developmental and/or psychiatric disabilities, many of whom could have avoided interactions with the juvenile justice system had they received appropriate in-home or community-based services.

Barriers to services:

Families report numerous barriers to home- and community-based services such as lack of providers, particularly in rural areas, and staff with insufficient training specific to the child’s needs. Families living in the metropolitan area report having to drive at least 20 miles to provider offices while families in rural areas travel over 100 miles to access services. Forty-nine point eight percent of Georgia families raising children with special health care needs report that they have had to stop working or have had to reduce work hours as a result of the lack of adequate supports and services (Centers for Disease Control and Prevention, 2011). Parents are often compelled to abandon their children as a result of these same barriers. Georgia DFCS currently maintains custody of more than 2,000 children and youth under 21 who experience a developmental and/or psychiatric disability and entered care due to parents’ inability to access behavioral services. 

Abuse and Neglect in institutional Settings:

While institutions are viewed as safe havens for children who experience disabilities, the opposite is true. Institutions have unique features that promote abuse and neglect, as the settings are segregated from the broader community. Children and youth are isolated, enabling mistreatment to continue undetected. Staff who witness abuse are afraid to report their concerns due to retaliation from administration and coworkers. Children who do not use words to communicate are seen as “easy targets,” as they are unable to report abuse and neglect (Verduga et al, 1995). Over 50% of nursing facility staff admitted to mistreating (e.g. physical violence, mental abuse, neglect) patients within the prior year (Natan, 2010).

Recently, police investigated an institution in South Georgia that serves people with disabilities. The investigation identified seven residents of varying ages who experienced numerous instances of physical abuse by five staff. The residents who were abused do not use words to communicate, allowing the abuse to continue undetected. When it was discovered, four staff were terminated and one arrest was made, and the accused staff person awaits trial.

Remedy

Decades of research supports that children who experience disabilities, like any child, thrive when in a loving home. Georgi’s children and youth with special health care needs will continue to be at risk for institutionalization, and the resulting abuse and neglect, as long as institutional settings are incentivized over services provided in the child’s home and community.

Georgia’s General Assembly can reverse the trend of the institutionalization of children and youth through the following: 

• Ensuring adequate funding is available for families to access necessary support service in the home or community
• Enforcement of existing federal mandates
• Creation of state policy that serves to maintain the family and deflect institutionalization

The General Assembly must require that ALL state funds be redirected from institutional care and into home- and community-based services.

To learn more about the Children’s Freedom In Initiative, contact Joe Sarra at the Georgia Advocacy Office: (404) 885-1234 or jsarra@thegao.org.

References:

Beren, A.E. & Nelson, C.A. (2015). The Science of early adversity. Is there a role for large institutions in the care of vulnerable children? Lancet: 386:388-98. Published online January 29, 2015. Retrieved from: http://dx.doi.org/10.1016/S0140-6736(14)61131.4

Erickson, W.L. & von Schrader, S. (2016). 2015 Disability Status Report: Georgia. Ithaca, NY: Cornell University Yang Tan Institute on Employment and Disability (YTI)

Johnson, C.P., Kastner, T.A., and the Committee Section of Children with Disabilities. 2005. Pediatrics Vol. 115 No. 2, February 2005

Natan, B.M. & Lowenstein, A. (2010). Study of factors that affect abuse of older people in nursing homes. Nursing Management, 17(8), 20-24. See www.ncbi.nlm.nih.gov/pubmed/21229867

Paul, A., & Cawson, P. (2002). Safeguarding disabled children in residential settings. Child Abuse Review, 11, 262-281

Thombury, C., & Olson, K., (2005). Developmental Disabilities Bulletin, 2005, Vol. 33. No. 1 & 2 

U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services (2018). Retrieved October 2017 from (https://www.medicaid.gov/medicaid/benefits/downloads/epsdt_coverage_guide.pdf.)

Verdugo, M.A., Bermejo, B.G., & Fuertes, J. (1995). The Maltreatment of developmentally handicapped children and adolescents. Child Abuse and Neglect, 19(2), 205-215

U.S. Health and Human Services, Centers for Disease Control and Prevention. 2017.  2009-2010 National Survey of Children with Special Health Care Needs.  https://www.cdc.gov/nchs/slaits/cshcn.htm; retrieved on October 2017