Responding to Infants and Young Children’s Special Needs
Charlie Bruner, Ph.D., Director, Child and Family Policy Center and the State Early Childhood Policy Assistance Network
Introduction
All infants and young children are special and unique. They grow and develop differently, according to their own constitution and their family and community environment. Nature and nurture both matter.
While all infants and young children are special and unique, they also are adaptable. Most infants and young children grow and develop through receiving general, normative public services and supports that include primary and preventive health care, early care (child care) and education (preschool) experiences, provided these services and supports are of good quality. Their families represent their first and most important nurturers, protectors, and teachers and can generally get them to the public services they need.
At the same time, some infants and young children have special needs that require more concerted, intensive, and individualized responses, often involving specialized professional care. These special needs can be physical, developmental, behavioral, or environmental. Physical special needs can cover a range of conditions that limit physical activity, including asthma, spinal bifida, cerebral palsy, and conditions that make infants and young children ventilator dependent or requiring assistive devices for mobility or communication. Developmental needs can include developmental disabilities and mental retardation, both limited and profound. Behavioral needs can include organic mental illnesses or non-organic aggressive or withdrawn behaviors. Environmental needs are often a result of responses to an absence of nurturing, lack of protection, or the presence of physical or emotional abuse.
As in other states, Michigan has specific programs and services, funded through and administered by three separate state agencies, for dealing with the special needs of infants and young children:
· Physical. Child health specialty clinics and services and medical coverage (particularly under Medicaid) to respond to physical needs. These physical health needs also include reducing exposure to environmental hazards such as toxic substances like lead and mercury.
· Developmental. Michigan Special Education services (eligibility begins at birth for some children), Early On (Part C of IDEA) services and preschool special education programs funded under Part B of IDEA to respond to developmental needs.
· Behavioral. Community mental health service programs/Prepaid Inpatient Health Plans (PIHPs) (Medicaid) and other insurance program services to respond to behavioral and mental health issues.
· Environmental. Child welfare services, including family preservation services, foster care services, and children’s protective services to respond to child abuse and neglect.
Infants and young children who have special needs in one of these areas can have special needs in another. Environmental needs can give rise to behavioral ones, as behavioral ones strain environments. Physical needs often include developmental ones. Therefore, there is a need for alignment or integration of service efforts across the different state agency programs that serve these infants and young children.
As importantly, there is a significant need to connect specialty services with the general, normative public services. Just as children have special needs across domains, they often have aspects of their development that are typical or normal, and too often they get cut off from “normative” public services. For example, children with special health care needs see many medical specialists, but often have nobody in the role of a “medical home” that is looking at the big picture, coordinating all the players, and seeing what is “normal” about the child and his/her life.
It is important to acknowledge that the presence of any of these special needs places infants and young children “at risk” of becoming marginalized and isolated from the sources of support that all infants and young children need to succeed. Research is clear that infants and young children with special physical needs often manifest the same behavioral responses – withdrawal, aggression, depression – as infants and young children who have been abused or neglected or those with developmental or organic mental health needs. All these groups of infants and young children are prone to being segregated from others and treated as problems rather than resources. While within each of these areas there is some stated emphasis for the need for “inclusion,” use of the “least restrictive environment,” and “normalization,” actual practice often falls short on creating opportunities for integration into many normal childhood experiences. Programs that serve infants and young children with special needs must be consciously and concertedly attentive to infants and young children’s need to be part of larger support systems and networks that all infants and young children need to thrive.
Finally, parents of infants and young children with special needs are experts on their children and need to be part both of building stronger and more effective systems and ensuring that families’, as well as infants and young children’s, needs are met. Parents of infants and young children with special needs can experience increased life stress, both in advocating for their infants and young children and responding to what can be challenging conditions and behaviors. Parent networks and support groups can be an important part of strategies to meet infants and young children’s special needs and these require support, as well. Just as important are efforts that help parents of young children with special needs to become a part of existing parent groups in their places of worship, child care centers and schools. These efforts acknowledge that children with special needs are children first and that their early connections to the larger community are very important to later inclusion in school and life.
As Michigan develops its Great Start Initiative, specific attention must be given to determining how each of the state agency programs for young children with special needs can best serve the population of infants and young children needing special support, ensuring that infants and young children are linked to other voluntary and professional supports they need for their healthy development, and taking steps to ensure that parents are a valued part of the process.
The next section of this paper examines the current Michigan services in each of these professional domains in relation to overall need and opportunity. Following that is a general discussion of the consequences of insufficient investments in meeting infants and young children’s special needs. The paper concludes with three key policy changes that Michigan should consider to more effectively respond to infants and young children’s special needs.
Current Status: Young Children with Special Needs in Michigan
Like other states, and with supporting federal funding, Michigan addresses the special needs of infants and young children – physical, developmental, behavioral, and environmental – through different services and funding streams.
Physical Needs. Clearly, a small number of infants and young children have health conditions that are severely limiting or require intensive, ongoing clinical services. These can include a variety of birth defects and abnormalities or conditions that are the consequences of childhood illnesses or accidents. These special health care needs generally are addressed in Michigan’s children’s specialty care services, which include Title V funding, other funding for children’s specialty hospitals and clinics, and Medicaid funding (most recently, Congress authorized additional opportunities to cover infants and young children with major health needs under Medicaid in families up to 300% of poverty through the Family Opportunity Act). They also include Ryan White treatment funding and family support subsidy funds. Home and community-based waivers under Medicaid have offered states opportunities to provide services to infants and young children with special health care needs in more normal settings, including the child’s home, rather than in hospitals and medical institutions.
Infants and young children with severe physical health conditions generally are covered for their clinical needs in Michigan. At the same time, however, this does not necessarily extend to supports for their families in providing nurturing and care (including respite care and peer support) nor assistance in meeting the demands for their care within their own homes, particularly where accommodations must be made. Advocates in many states have used the EPSDT entitlement under Medicaid to secure, sometimes through the courts, coverage for such services as physical therapies, assistive devices, and even adolescent and adult diapers. Still, it often has been difficult for families to secure the types of non-clinical services that are most helpful to them in enabling their infants and young children with special health care needs to function and be part of activities that infants and young children in most families take for granted. Private health insurance coverage often imposes lifetime maximums on care and treatment for special health care needs, which makes it even more important that state Medicaid and other systems offer this care.
Many more infants and young children, however, have special physical health care needs that are not as severe but nonetheless require significant attention that goes beyond general primary care. The 2003 National Survey of Children’s Health shows parental reports of moderate or severe health conditions for their infants and young children (ones that affect normal activity) as higher than the national average – 9.2% of all Michigan children versus 7.9% of children in the country. Parental reports of asthma-related health issues similarly are higher – 9.1% of Michigan children versus 8.1% nationally (and likely double that rate in poor, inner-city neighborhoods). The 2001 National Survey of Children with Special Health Care Needs identified 13.9% of Michigan children in a special health care needs category, compared with 12.8% of infants and young children nationally. While the rates were lower for young children (7.7% of Michigan’s 0-5 year-olds and 7.8% of the country’s 0-5 year-olds), this may relate to parental diagnosis as much as prevalence. This survey also reports that nearly one-third of parents report the absence of family-centered care in the treatment of their children’s special needs, over one-quarter whose health insurance coverage was deemed inadequate to meet those needs, and nearly one-quarter whose child’s special needs affected parental employment.
Identifying such special needs and then finding both clinical and non-clinical services for these young children needs to be part of basic, well-child care. Michigan’s participation in the Assuring Better Child Health and Development (ABCD) Initiative sponsored by the Commonwealth Fund provides options to pursue in this area in further incorporating comprehensive screening and follow-up practices for identifying and starting to address these needs. Ensuring every child has a medical home is important to this end, but the medical home needs to include well child care that can truly identify and then address such needs.
Developmental Needs. As part of the Individuals with Disabilities Education Act (IDEA), Congress established and provides federal funds for an early intervention program with infants and toddlers (birth through two), also known as Part C. Michigan’s Early On program is its Part C program, and serves approximately 9,224 infants and toddlers, or 2.38% of all infants and toddlers in the state, about average among all states.
While technically an entitlement to service, states have the authority to define eligibility for Part C services and set up programs to serve them. Federal funding is in the form of a categorical grant and not an entitlement. Several states have put significant state funding into Part C and serve a much larger portion of their young child population than does Michigan, with four states having Part C programs that serve over 5% of all infants and toddlers.
Recently, Congress required that all young children who become involved in the child welfare system through a confirmed case of child abuse or neglect be offered screening and identified follow-up services through Part C. Further, Congress required that all birth to three year olds placed into foster care receive Part C screening and any identified needed follow-up services for developmental delays. The Michigan Department of Human Services will soon have in place a system that will refer all children coming into foster care and those involved with high intensity Children’s Protective Services (CPS) to Early On, which is then required to conduct a full developmental evaluation of these children per its state plan.
Research has shown the benefit of early identification and treatment of developmental delays across a wide spectrum of possible delays, with infants and toddlers frequently being able to compensate for learning disabilities and erase developmental delays when such services are provided. While the prevalence of these delays is greater within lower-income families, the actual use of Part C services often is higher among middle-income and professional families, who are more likely to actively seek such services and to have the connections and time to do so.
Clearly, by comparison with some other states and with knowledge of underlying need and prevalence among young children of developmental concerns, Early On could potentially serve many more birth to three year olds than it does today. Doing so will require significant outreach efforts to families, intentional efforts to strengthen collaboration amongst professionals who see young children (particularly pediatric practitioners, child protective service workers, and child care providers) and a substantial state investment to fund, in particular, early intervention services for young children that are eligible for Early On but not preschool special education.
Behavioral Needs. Child mental health services, particularly for very young (0-5) children, are still developing. While diagnostic crosswalks now exist for infants and toddlers with DSM-IV psychiatric codes, there is still not agreement on many issues of what constitutes mental health conditions among young children. There clearly are recognized organic mental health issues such as autism and AD/HD (itself with some controversies) that affect young children. There also are mental health issues that relate to environment, nurturing, and the attachment relationship and others that relate to non-organic but inappropriate behaviors, particularly around aggression, that affect young children but may or may not be considered mental health issues.
In part because of the fuzzy nature of what constitutes mental illness among children, there are no firm estimates on the percentage of children, and particularly young children, with mental health conditions or concerns. Still, it is frequently reported that 8-16% of children have mental conditions that can benefit from professional intervention. While the figures may be lower for younger children, they still are generally quoted in that ballpark. Moreover, there has been a pronounced increase over the last two decades in psychiatric admissions of younger children for behaviors that constitute threats to their own safety or to others around them.