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 Behavioral needs can include organic mental illnesses or non-organic aggressive or withdrawn behaviors.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.
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
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.
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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
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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 yearolds 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
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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 lowerincome 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 nonorganic 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.
Through Community Mental Health Services Programs and Prepaid Inpatient Health
Plans, Michigan provides services to eligible young children and their families with the most severe mental health conditions. Michigan also provides support to community
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efforts to provide systems of care for infants and young children with serious emotional disturbances.
Estimates are that approximately one percent of Michigan’s young children (0-6) receive public mental health services (1,629 children birth-3 years and 3,019 children 4-6 years).
These constitute the most serious cases of mental illness or emotional disturbance, but they do not get to those for whom signs of disturbance exist which, left unaddressed, are likely not to resolve themselves but become more pronounced and severe as children grow up.
Environmental Needs.
Child maltreatment is known to have adverse physical, developmental, and behavioral impacts upon infants and young children. Similarly, infants and young children with special needs are most likely to produce stress in homes that places them at higher risk of maltreatment. First signs of child abuse and neglect afford the opportunity to intervene early to respond both to the safety of the child and to the child’s physical, developmental, and behavioral needs.
A substantial number of Michigan young children will come to the attention of the child protective service system before they reach school age. Young children with founded cases of child abuse or neglect are among the most vulnerable children for future problems in school, with the courts, and in life. While there may need to be outreach by
Early On and other programs to find young children with special needs, many young children with special needs already have been identified by a system, the child protective service system.
National goals for the child welfare system are safety, permanence, and well-being. In part because of resource constraints and in part because of culture and liability concerns, the emphasis in most states has been primarily on safety for those who remain in their homes and permanence for those placed into foster care – with many fewer resources devoted to addressing infants and young children’s developmental needs. Michigan has a nationally recognized family preservation services program to keep families together, but there is also need for ongoing support to families and their young children in fostering their children’s development.
The federal requirements for states to link Part C ( Early On) with child welfare offer an opportunity for states to expand upon their approach to child welfare and focus more attention on child well-being and development. Such Initiatives as the “Community
Partnership for Protecting Children” have shown promise for taking a much broader approach to child protection that recognizes the need to strengthen the bonds between parent and child and to support families in meeting infants and young children’s special needs.
The child protective services system is most vulnerable when it does not have strong connects to and the support of the community within which it operates. The child protective service system does not necessarily need to provide the services that families and young infants and young children require to address the infants and young children’s
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special needs, but it does need to be linked with those services at the state and community level. In particular at the community level, the child protective service system can also help families connect with other environmental supports to aid in meeting their infants and young children’s special needs.
Meeting Overall Physical, Developmental, Behavioral, and Environmental Needs.
While this section has treated each of the programs designed to address special needs as discrete, the fact is that young infants and young children and their families often have needs in multiple areas and need types of support that cut across programs housed in different state agencies. While professional response and expertise often is required to responds to a child’s specific special need or needs, there also must be an overall whole child approach to meeting those needs. A Child Trends analysis of the nationally representative cohort study of 21,000 children entering kindergarten in 1998-9 (the Early
Childhood Longitudinal Study ECLS-K) showed that children starting school behind their peers rarely do so only in one area – when separated out by physical, social and emotional, and cognitive characteristics. In addition, children are most vulnerable to not catching up and falling further behind their peers if they are behind in multiple areas – and a very significant share of all entering kindergartners (25.6%) are behind in two or more areas.
The Child Trends analysis points to the need for an approach to identifying and addressing young children’s special needs early in life from a whole child approach – and the consequences to not doing so in children starting school vulnerable to school failure and other social concerns.
The Consequences of Insufficient Investment and Long-Term Implications
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Young children with profound special needs may never get to the point of starting kindergarten on a similar trajectory to their peers, e.g. ready to achieve proficiency according to population-based norms. At the same time, evidence-based programs exist for infants and young children with special needs of all types that have proved effective in improving their quality of life – and often significantly elevating their trajectories for healthy growth and development. For example, early identification and treatment of autism cannot “cure” autism, but it can enable infants and young children (and their families) to deal with that autism, build upon other strengths, and be healthier and perform at higher levels, with benefits to society as well as to the child.
Research related to physical, development, behavioral, and environmental special needs all shows the ability to affect the child’s overall trajectory in life, particularly by increasing protective factors and reducing risk factors as part of addressing the particular special need. Identification and treatment of such special needs in the earliest years is particularly crucial for two reasons – it affects the trajectory at the outset and therefore all future years of development and it represents the time during which brain research has shown an individual’s critical social and emotional pre-dispositions and underpinnings are established.
Nobel laureate economist James Heckman, reviewing early childhood programs and contrasting them with later human capital development programs, concluded, “Invest in the very young.” While his research applied to largely to preschool programs, the logic applies even more strongly to those that address special needs, and, in many respects, the research base on positive impacts is even stronger.
In fact, the costs of responding to special needs in later adolescent and adult life – through special education, mental health and retardation institutional and communitybased services, juvenile justice and adult corrections programs, and income support programs for the unemployable – constitute the major non-elderly government expenditures outside education. Many are themselves growing and strained to the point of primarily offering maintenance support and critical care.
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Changing the trajectories of very young children with special needs, even modestly, can have huge impacts upon future social demands and costs.
Three Key Policy Changes
The Great Start System Blueprint has a number of important, discrete goals and action steps that can lead to better meeting infants and young children’s special needs within different areas of need. These can help build Michigan’s overall response to infants and young children with special needs and their families that can lead to optimizing those children’s trajectories in life.
The following three key policy changes are in addition to those discrete steps already outlined in the Great Start System Blueprint and also form some of the underpinnings that will be needed for the individual action steps to be truly effective.
1.
Organize strategies for meeting infants and young children’s special needs that cut across programs administered by various state agencies and explicitly take a whole child, ecological focus.
Whether infants and young children have a special physical, developmental, behavioral, or environmental need, they are children living in families who have day-to-day hopes and opportunities for growth that are best achieved within a nurturing and homelike environment. While these children may require specialized, professional services – potentially for more than one special need – these services need to be aligned and focus on strengthening family capacity, community involvement and connection as well as meeting the child’s specific identified special needs. Reform efforts in all fields serving infants and young children with special needs stress the importance of ecological approaches that are strength-based, inclusive, family-centered, and individualized.
Meanwhile, however, specific program policies and rules often categorize and silo, restricting services and plans to professional interventions.
As Great Start develops its strategies, at least in selected communities, it could take a specifically cross-system approach to working with young infants and young children and their families, blending and braiding funding where possible to take that whole child approach.
2.
Explicitly provide support for parent organizations and self-help networks to provide mutual assistance in meeting their children’s needs and lead change within systems to serve those infants and young children more effectively.
Parents are experts on their own infants and young children and their children’s development and need to be partners in any plans designed to address their special needs.
They can benefit from support from others in doing so, with natural affinities with other parents who have infants and young children with the same special needs. Public systems and funding streams, however, seldom provide explicit support to developing
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such support networks, although most states have parent groups locally that advocate for their infants and young children and provide support to one another. Some have organized in some states and developed state networks, including Family Voices, the
Federation for Families for Children’s Mental Health, the Association for Retarded
Citizens, Parents Anonymous, and Adoptive and Foster Parent Associations. Parent
Information Resource Centers (PIRCs) now exist in all states to help families access resources under the No Child Left Behind legislation.
As Great Start develops its strategies, it could enlist existing parent self-help groups and organizations and draw upon national networks in identifying how public systems can support the development of those networks and be responsive to their voices. There may be additional power in convening such networks across the realm of infants and young children’s special needs to identify ways all systems can support them.
3.
Continue and strengthen state efforts to reform and properly finance Early
On and establish the Family Opportunity Act for children with special health care needs under Medicaid .
The first two policy changes speak to cross-cutting issues in meeting infants and young children’s special needs. The last policy change recommendation speaks to transforming
Early On and taking advantage of opportunities to better meet the needs of young children and their parents.
The federal Part C program, known as Early On in Michigan, is a particularly important piece of federal legislation in taking a very strength-based and family-centered approach to addressing healthy development and focusing specifically upon infants and toddlers.
While special education can have a real stigma in schools, the Part C program has sought to avoid that stigma and focus upon individualized responses to infants, toddlers and their families that promote their development. It certainly is a less stigmatizing system than child welfare and a less labeling one than child mental health. Experiences in other states show that, with sufficient funding, it can reach and effectively serve many more potentially eligible infants and young children, particularly when it is effectively linked to other systems, e.g. health, mental health, child welfare and child care. It offers an opportunity to construct an easily accessible, early intervention system that can individualize services to meet children’s needs and to meet parent needs to assure that parents have the information, resources and skills they need to support the development, health and learning of their infants and toddlers.
The newly established Family Opportunity Act offers additional support both for covering children’s special health care needs that private insurance will not cover while also strengthening parent involvement. Michigan could become a lead state in taking advantage of this federal option and strengthening public coverage for children whose families otherwise will face hardships in providing needed care.
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