CONTRIBUTED BY SPAN
Children who live with complex medical needs are often highly dependent on intensive and expensive interventions and equipment. Historically, like many other states, New Jersey relied on institutional care for children with such complex needs. However, it is generally accepted that children's social, psychological, emotional and developmental needs are best met at home.
Further, children and families want to be together, not separated. With technology and other developments in care for children with complex medical conditions, it is becoming increasingly possible to support them in their homes and communities. The SPAN Parent Advocacy Network (SPAN) strongly supports this current movement towards community-based supports and services for children with complex needs. In addition to the desire of children and families to be together, there are other reasons to eliminate – or at least significantly limit – institutionalization of children with complex needs, including the provisions of the Americans with Disabilities Act (ADA) and the US Supreme Court decision in Olmstead, and the potential for exposure to infectious diseases.
Americans with Disabilities Act
The ADA states that "goods, services, facilities, privileges, advantages, and accommodations shall be afforded to an individual with a disability in the most integrated setting appropriate to the needs of the individual." In the 1999 Olmstead vs. LC decision, the US Supreme Court rules that states must offer a community living option to anyone with a disability if (a) the individual is able to live in the community with appropriate services and supports, (b) the individual wants to live in the community, and (c) the state can provide community living with reasonable modifications, taking into account its resources and the services being provided to other individuals with disabilities.
For children, the situation is more complicated. Parents or guardians are expected to care for their dependent minor children, whether or not they have disabilities or special healthcare needs, and as such, dependent minor children are evaluated in the context of their family situation. Unlike anyone over the age of majority, minor children are not fundamentally eligible for community services based solely on their disability. Instead, their family income is included in their eligibility evaluation, and many children are excluded from services because their families make too much money. Social Security Administration Law, however, does require that states extend Medicaid eligibility and associated services to children who reside in institutions, including hospitals, on a longterm basis. This is because children residing in institutions are evaluated using institutional deeming rules, while children living at home are evaluated using community deeming rules. This institutional bias means that states are required by federal law to pay for a child's care in an institution, but do not have to pay for it in a home or community- based setting. In order to address this issue, virtually all states, including New Jersey, have Medicaid waivers, TEFRA programs, or similar other programs that offer benefits and services to children with disabilities who do not qualify because their families make too much money. (See Medicaid, below)
risk of infectious disease
Congregate institutional care can lead to rapid spread of bacterial infections such as the adenovirus outbreak that occurred in October-November 2018 at the Wanaque Center for Nursing and Rehabilitation. At the Wanaque Center, 29 children became ill as a result of the outbreak, and 10 children died. In congregate institutional care, it is difficult to control the spread of infectious diseases.
supporting children with complex needs at home and in the community
Medicaid is the most common support for children with complex needs. Home and Community Based Services (HCBS) can provide long-term care supports and services, including private duty nursing, attendant care, and assistive technology, to help families keep their child at home. It also offers non-emergency medical transportation to appointments and case management to help the family coordinate medical, social, and other services. Families can find out about Medicaid and waiver eligibility by contacting the Special Child Health Services Case Management Unit in their county found at nj.gov/health/fhs/specialneeds/contacts.shtml.
Even if a child's "family of origin" cannot care for their child with complex needs at home, there are other options besides institutional care. For example, in "Care Options for Children and Adolescents with Disabilities and Medical Complexity," the American Academy of Pediatrics noted that, "When families believe they cannot care for their child in their home, other noncongregate family-based options may be possible. These may include host families, shared care arrangements, and voluntary foster care."* Host families could include "kinship" care (care provided by a relative).
SPAN agrees with the AAP Council on Children with Disabilities, on which SPAN serves in New Jersey, that "all children, including those with complex medical conditions and technology dependencies, ideally are cared for in their own homes and with their families whenever possible," but also recognizes that there may be limited situations where out-of-home placement for children with complex conditions is at least temporarily needed, but such placement should always be a last resort and used only when home or community living is "not a safe or sustainable option."*
Unfortunately, some families may place their child with complex needs in an institutional setting because they are not aware of other options. Families can work with their Case Manager at their county Special Child Health Services Case Management Unit to explore their options and get the care management and other services they need to survive and thrive at home, in the community.
To find out more about what children with medical complexity and their families need – and deserve! – read the Briefing Paper from the Lucille Packard Foundation for Children's Health at lpfch.org/publication/what-children-medical-complexity-their-families-and-healthcare- providers-deserve-ideal •
The SPAN Parent Advocacy Network is committed to empowering families as advocates and partners in improving education, health, and mental health outcomes for infants, toddlers, children and youth. SPAN offers families, professionals, policy makers and our parent center colleagues information, resources, support and advocacy assistance addressing: effective parent involvement, child care, general and special education, dropout and bullying prevention, child welfare, health care, mental health, youth leadership, transition to adult life, incarcerated youth, military family support, violence prevention and more.