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Permanency planning for children and youth: out-of-home placement decisions.

ABSTRACT: This article advocates the extension of permanency planning" in out-of-home placements to include those children and youth with developmental disabilities. It discusses permanency planning and notes its promise in improving the opportunities of all children and youth to grow up in a stable family environment. There is a need for major initiatives in this area: 78% of children and youth with developmental disabilities who are placed in long-term care have no such protections. Though some states currently operate programs according to the principles of permanency planning, significant changes in existing federal policy are recommended to require permanency planning in federally supported out-of-home care for all children, including those with severe disabilities.

In 1978, the Children's Defense Fund (CDF) issued a report, Children Without Homes (Knitzer, Allen, & McGowan, 1978), that indicted federal and state governments for complicity in depriving about 400,000 children of the benefits of growing up in a stable family environment. In the Preface, Marion Wright Edelman, Director of CDF, wrote

At the federal level there is a pressing need for

strong leadership and legislative reform. Particularly

crucial is the passage of child welfare

legislation which would: erase federal fiscal incentives

to keep children in out-of-home care; increase

funds for preventative and restorative services;

strengthen protections for children and families; and

ensure children permanent families. (p. xiii)

It now seems apparent that the county sampling strategy employed in estimating 500,000 children and youth in substitute care in 1977 was one that yielded a substantial overestimation. Fortunately, this "error" helped stimulate good public policy. More realistically, about 260,000-270,000 children and youth were in substitute care in 1977 (see Hill, Lakin, Novak, & White, 1987).

Spurred by the CDF report, the advocacy of a range of child welfare groups, and changing perspectives within the field of child welfare, Congress enacted Public Law 96-272, the Adoption Assistance and Child Welfare Act of 1980. P.L. 96-272 was a direct response to the "antifamily bias" and pervasive problems characterizing the child welfare system at that time. Among these problems were that: (a) more children were placed in foster care and other out-of-home settings than considered necessary or appropriate; (b) too many children remained in foster care and other settings too long and with little hope of either returning to their natural families or being freed for adoption; and (c) children in foster care and other out-of-home placements often bounced from setting to setting with few prospects for a stable family life.

P.L. 96-272 represented an important shift in federal policy away from support of out-of-home placements and toward support of home and family living. The law was intended to put an end to "foster care drift" and makes reference to "reduction in the duration of foster care for children. " As Grimm (1985) wrote about the context in which the bill was passed:

Among other problems in foster care, national

studies had documented that many children lingered

in temporary foster care placements for years, never

returning home to their parents or becoming

permanent members of new families. Congress

sought to put an end to this foster care drift by

imposing a mandatory review system upon the

states and the local child welfare agencies which

were responsible for foster children. (p. 24)

Congress mandated that for states to receive funds

under P.L. 96-272 they must comply with "permanency

planning" for children in foster care and other

out-of-home settings (Maluccio, Fein, & Olmstead,

1986). Yet while permanency planning has become

a central feature of child welfare policy, its influence

is limited among agencies focused on developmental

disabilities. Not only are such agencies not covered

by the requirements of P.L. 96-272, they are usually

unfamiliar with the principle of permanency planning,

its premise that a stable family life and enduring

relationships with adults are essential to the development

and well-being of children, and its promises

that when social services agencies are involved in the

lives of children they will be committed above all

else to meeting the need of all children for a

permanent family.

This article explores the applicability of the

philosophy and policy of permanency planning for

children with developmental disabilities. It examines

the status of children with developmental disabilities

in out-of-home settings, discusses permanency planning

in federal and state policy, and advocates

adopting the concept as a guiding principle for the

activities of all agencies serving children and

families, including those serving children with

developmental disabilities and their families.

CHILDREN WITH DEVELOPMENTAL

DISABILITIES OUT-OF-HOME

The number of children with developmental disabilities

placed out-of-home whether in foster care, small

group facilities, or institutions, has declined substantially

over the past decade. in just 6 years---from January 7, 1980, to December 31, 1985-the number of children and youth (birth to 21 years) with mental retardation and related developmental disabilities in generic (social services/child welfare) foster care decreased from 21,400 to an estimated 13,900, or about 35%, as compared with a decrease of about 3,300, or about 2% (to 261,300), for all children and youth in foster care (Hill, Lakin, Novak, & White, 1987). In just 9 years---from June 30, 1977, to June 30, 1986-the number of children and youth in state-administered, long-term care programs for persons with mental retardation/developmental disabilities decreased from 91,000 in 1977 to 60,000 in 1982 to an estimated 48,450 in 1986, or about 45% (Lakin, Hill, & Bruininks, 1985; National Center for Health Statistics, 1987). Many factors have contributed to this trend, but the passage of Public Law 94-142, the Education for All Handicapped Children Act of 1975, was probably the most important. It helped assure that children would not be pushed out of home solely to receive educational or developmental services. It also provided parents of children and youth with severe disabilities, often previously excluded from school, with daytime respite and the opportunity to pursue employment or leisure activities.

Yet, despite the decline in the number of children with disabilities placed out-of-home, an estimated 62,350 children and youth with mental retardation/ developmental disabilities (MR/DD) were in publicly supported, out-of-home residential placements on June 30, 1986. These numbers include an estimated 13,900 in generic social services/child welfare foster care whose placements fall under the guidelines of the permanency planning provisions of P.L. 96-272. These numbers also include about 48,450 children and youth with mental retardation in long-term care programs operated by state and regional mental retardation/developmental disabilities agencies, as estimated by the Inventory of Long-Term Care Places (National Center for Health Statistics, 1987) and the Recurring Data Set Project at the University of Minnesota (Lakin, Hill, White, & Wright, in press b).

These are children and youth for whom "permanency planning" in the sense envisioned in P.L. 96-272 is rare. Of these 48,450 children and youth (21 years and younger) in long-term care settings for persons with MR/DD, approximately 7,150 children and youth were among the 19,100 total persons placed in state-sponsored specialized foster care settings; 24,000 children and youth were among 132,500 persons in private (nonfoster) and small public MR/DD residential facilities; and 17,300 children and youth were among the I 00, I 0 residents of large state institutions for persons with mental retardation/developmental disabilities. Assuming age distributions among these populations identical to those found in the most recent research providing age breakdowns (see notes in Table 1), an unduplicated count of the total number of children and youth with MR/DD in the different types of "facilities" by age group would be approximately as shown in Table 1.

The "generic foster care" column of Table I represents those children and youth in programs covered by the provisions of P.L. 96-272, to whatever extent they may be applied in practice. The larger group of children and youth in state MR/DD-agency-administered programs is shown in the

specialized foster care, " "private and small public facilities," and "state institution" columns. A number of observations can be made from Table 1. First, and perhaps most important, only about 22% of the children and youth with MR/DD in out-of-home care are in placements administered by social services/child welfare agencies.

Second, the younger a child is, the more likely he or she is to be potentially covered by the provisions of permanency planning: 50% of 0-4 year olds; 36% of 5-9 year olds; 28% of 10-14 year olds; and 13% of 15-21 year olds.

Third, the estimated number of children and youth with MR/DD growing up in either generic or specialized foster homes (21,000) is not much larger than the number of children and youth in state MR/DD institutions (17,300), and the number of youth 10 years and older with MR/DD in foster care (14,400) is actually less than the number growing up in state institutions 15,800).

Fourth, nearly twice as many children and youth with MR/DD in out-of-home placements are growing up in public and private congregrate care settings (41,300) than in foster homes (21,000). While many congregate-care settings attempt to emulate aspects of family life, they are naturally quite limited in their ability to do so. PERMANENCY PLANNING AND FEDERAL POLICY P.L. 96-272 is perhaps the most far-reaching piece of federal legislation affecting child welfare programs administered by the states. This law has had two major impacts. P.L. 96-272 established a new Title IV-E of the Social Security Act to provide federal matching funds for adoption subsidies for "special needs children" in foster care or child care institutions, as well as funds for foster care programs. States receiving federal foster care funds were required to participate in the federal adoption assistance program. For a child to be eligible for an adoption subsidy, three conditions were specified. First, the biological parents or custodial relative must meet financial eligibility criteria (generally eligibility for Aid to Families of Dependent Children or Supplemental Security Income). Second, the child must have "special needs," resulting from factors such as age, race, or ethnicity; medical conditions; or physical, mental, or emotional handicaps. " Third, efforts have been unsuccessful to place the child in an adoptive family without subsidy.

in addition to providing federal matching funds for adoption subsidies, P.L. 96-272 mandated a set of permanency planning procedures for state welfare agencies receiving funds for children in foster care or child care institutions. The major requirements of these procedures include the development of a written case plan" and the establishment of a "case review system" for each child. The case plan is defined in P.L. 96-272 as "a plan for assuring that the child receives proper care and that services are provided to the parents, child, and foster parents in order to improve the conditions in the parents' home, facilitate return of the child to his own home or the permanent placement of the child, and address the needs of the child while in foster care. "

The "case review system" is defined in P.L. 96-272 as a procedure for assuring that "each child has a case plan designed to achieve placement in the least restrictive (most family-like) setting available and in close proximity to the parents' home, consistent with the best interest and special needs of the child." The case review system includes at least two reviews: (a) a 6-month review by a court or administrative body, which can include a citizens' review board, of the appropriateness of placement, compliance with the case plan, progress toward addressing the reasons for placement, and a projected date by which the child can return home or be placed for adoption; and (b) an 18-month "dispositional hearing" (and periodically thereafter) by a court or court-approved administrative body on the child's future status, including return to the parent, continued foster care placement, adoption, or permanent foster care.

Whereas P.L. 96-272 undoubtedly has had a major impact on child welfare agencies and has contributed to improving the lives of many children served by those agencies, the law is characterized by a major flaw regarding children with disabilities. Since P.L. 96-272 applies only to public welfare agencies, children served by state MR/DD agencies are not included under the protections of the law. As noted previously, only about 22% of children and youth with mental retardation placed out-of-home are in "generic foster care." It is only these children who benefit from the protections of P.L. 96-272 even though, ironically, children with physical, mental, or emotional handicaps were singled out as having special needs" in the legislation.

For children with developmental disabilities, current federal programs still promote out-of-home placement. The largest of these programs, in terms of federal contributions, is a Medicaid program called Intermediate Care Facilities for the Mentally Retarded .ICF-MR), which provides over $3 billion in federal funding each year for about 144,000 residents of ICF-MR, facilities (Lakin, Hill, White, & Wright, in press b). Most ICF-MR recipients live in state institutions, although private institutions and small group homes may also be certified for the program. ICF-MR participation brings federal reimbursements of from 50% to 80% of the cost of care in return for a facility's meeting rather stringent and specific institutional standards.

The "Medicaid waiver" options, including the Medicaid home and community-based services waiver and the so-called "Katie Beckett" model waiver, have provided an important alternative to institutional care. These options permit Medicaid funding of noninstitutional services for persons who in the absence of those services would be at high risk of being institutionalized, generally at a significantly greater cost to Medicaid. The Medicaid waivers offered significant opportunities to develop programs to support children and youth with severe disabilities in their own families. However, because the program was established so as to limit total Medicaid expenditures for institutional and noninstitutional services to no more than what would have been the cost of institutional services in the absence of the waiver option, states have been able to serve relatively small numbers. There were just over 23,000 beneficiaries with MR/DD on June 30, 1986, at a federal cost of under $200 million (Lakin, Hill, White, & Wright, in press b). States also tend to be oriented toward people who are already in state long-term care systems. Only about one-third of Medicaid-waiver-service recipients live with their own families (Lakin, Hill, Bruininks, Greenberg, & Schmitz, 1985; Laudicino & Burwell, 1987).

On a federal policy level, there are two major changes needed to further the rights of children with developmental disabilities to a permanent home. The first is a revision of P.L. 96-272 to encompass all children placed out-of-home by any public agency, not only those receiving funds under the Act. The protections of P.L. 96-272 should apply to all children in any state in which funds are received under P.L. 96-272. The second major change needed is incorporation of permanency planning requirements into all federal programs providing benefits to children and youth with disabilities. In other words, when federal funds are being used or considered for use to provide out-of-home placements to children and youth, whether through Medicaid long-term care programs, residential school placements funded by P.L. 94-142, residential services "purchased" with Social Security cash assistance payments to persons with disabilities, or any other federal assistance, those children and youth should be guaranteed the protections of permanency planning. PERMANENCY PLANNING AND STATE POLICY Just as the federal government has excluded most children with mental retardation from the protections of P.L. 96-272, very few states have incorporated permanency planning into their mental retardation system policies and procedures. The Michigan Department of Mental Health, one notable exception, describes in reflection on its own past practices:

A double standard has existed in Michigan for those

children placed with the child welfare system and

those children placed with the mental health system.

Permanency planning of children entering the child

welfare system is required by both federal and state

law to insure that children enter care only when

necessary, are reviewed periodically, and provided

permanent families in a timely fashion. There has

been no similar requirement for children voluntarily

placed in care with the Michigan mental health

system---these children have not been provided the

protections of a system oriented toward a child's

need for permanency. (1986, pp. 3-4)

The issue of permanency planning highlights the disjointed nature of child care systems in most states. Most states operate dual systems for children: the social services/child welfare system and the MR/DD system. Not only do most states operate separate child welfare and developmental disabilities residential programs, but jurisdictional disputes and ambiguities between agencies regarding responsibility for children with developmental disabilities are common (Taylor & Racino, 1987). Child welfare or social service agencies may claim that they do not have the expertise to serve children with developmental disabilities. MR/DD agencies may lack the authority, resources, or experience to pursue permanency planning and adoption.

To exemplify these problems, the University of Minnesota survey of state social services agencies (Hill et al., 1987) provided a hypothetical example of an 8-year-old boy with mental retardation whose family felt they were no longer able to care for him at home. Respondents were asked what factors would determine whether this child was considered for child welfare services and foster care placement under the guidance of permanency planning, or a state MR/DD agency-sponsored residential or foster care placement. Responses evoked a picture of two generally disjointed systems in which decisions about placing children were more often expressed in terms of agency needs than in terms of individual children's needs. Many respondents indicated that the placement of the child was dependent on the availability of homes, the particular agency first contacted, or the resources available in each agency to fund new placements. In at least seven states, placement in a generic foster care home could not be made without some type of legal/court procedure (e.g., charges of abuse or neglect), propelling voluntary" placements away from the protections of P.L. 96-272. Numerous respondents noted that a major incentive for moving children and youth into state MR/DD-agency-sponsored programs was the greater levels of available funding through state and federal sources.

Although the federal government and most state MR/DD agencies continue to ignore the rights of children with developmental disabilities to permanency and stability in their lives, a few states have begun to address permanency planning in policy and practice. Michigan's Department of Mental Health stands out as the first state agency to adopt permanency planning as a guiding principle for children with developmental disabilities. Consistent with Governor Blanchard's (1984) goal that no child with developmental disabilities be institutionalized in the state, Michigan has developed a range of family support programs, including a family subsidy, and has incorporated permanency planning into state policy and procedures. Michigan operates under the following definitions and assumptions (Michigan Department of Mental Health, 1986, pp. 5-6):

Michigan's definition of permanency planning is:

A planning process undertaken by public and

private agencies on behalf of developmentally

disabled children and their families with the explicit

goal of securing a permanent living arrangement

that enhances a child's growth and development.

Permanency Planning for children is directed to

securing:

1) a consistent, nurturing environment;

2) an enduring, positive adult relationship; and

3) a specific person who will be an advocate for

the child into adulthood.

The underlying assumptions of Michigan's policy

are:

1) It is generally in the best interest of children to

remain at home with their family. Therefore,

public agencies should first attempt to plan,

provide, and coordinate services in such a

manner that the integrity of the family unit may

be maintained.

2) If a child cannot be maintained in the home, it

is assumed that a public agency should then give

priority attention to the provision and coordination

of those services that will facilitate reunification

of the child with his/her family at the

earliest possible time after placement out of the

natural home.

3) If reunification of the child with his/her family

is not possible, and there is no active parental

involvement with the child, the feasibility of

adoption planning should be rigorously pursued.

4) For some children, already in care, strengthening

the ties with the birth family by increasing

the quality of involvement while the child

remains in foster care may be the most

appropriate permanency planning option. For

certain other children, the permanency planning

path may include such alternatives as long-term

foster care, supplemented by securing an advocate

or a guardian.

5) Institutionalization is not considered to be an

appropriate permanency planning option.

Other states have begun to adopt permanency planning as a policy to govern out-of-home placement for all children and youth. Based on a statement developed by the Center on Human Policy (1987), endorsed by the Board of Directors of the Association for Retarded Citizens of the United States (1987), Nebraska's Unicameral Legislature passed the "Family Policy Act" that endorses permanency planning children and families (GOARC Gazette, 1987). Nebraska's law reads:

When children are removed from their home,

permanency planning shall be a guiding philosophy.

It shall be the policy of the state to reunite the

child with his or her family in a timely manner if

reunification is in the best interest of the child; and

when families cannot be reunited and when active

parent involvement is absent, adoption shall be

aggressively pursued. Absent the possibility of

adoption other permanent settings shall be pursued.

(GOARC Gazette, 1987, p. 8)

Also, in its recent 1988-92, 5-year plan, Connecticut's Department of Mental Retardation (1987) endorsed the philosophy that "All children, including children with mental retardation, need a permanent home and enduring relationships with one or more adults" (p. 43). PERMANENCY PLANNING AS A PHILOSOPHY Permanency planning is first a philosophy. It is a way of thinking about and valuing children and families. But permanency planning can be reduced to a bureaucratic exercise without success in bringing about the desired result and without commitment to the underlying philosophy (see the Syracuse HeraldJournal's [January 10-15, 19881 five-part series, "The Disposable Children").

Central to permanency planning is the belief that all children, regardless of disability, belong in families. It provides clear direction when government is involved with children and families. It assumes, as did Wickenden in the Foreword to CDF's Children Without Homes Knitzer et al., 1978), that:

When government assumes responsibility for children,

it owes them the kind and degree of nurture

children require for their development. .

Children require, before all else, the sense that they

belong to reliable and loving adults who will care

for their needs, emotional as well as physical. . . .

Children require stability, most particularly an inner

assurance that caring adults will remain firmly in

their lives. (pp. x-xi)

As a guiding orientation to services for children and youth with developmental disabilities, permanency planning implies the following principles. Support the Family Permanency planning is based on the principle that agencies should provide "whatever it takes" to n le children to row u in families. Years after Ed Skarnulis admonished agencies to "Support, don't supplant the family," states have begun to allocate funds for family support services (Taylor, Racino, Knoll, & Lutfiyya, 1987). As of 1985, 49 of the 50 states had established some form of family support programs for children with developmental disabilities (Bradley & Agosta, 1985). In most states, however, family support programs reach too few families or provide too little support to meet the existing needs. Often the services available in family support programs are too inflexible to meet the broad range of needs among individual families (Bradley & Agosta, 1985; Taylor, Racino et al., 1987). Whereas families may have such diverse needs as physical modifications to their home, transportation, and in-home supports, family support programs are often limited to one or two services, most often out-of-home respite care.

In contrast to the more limited and inflexible family support programs, a few states and agencies have established "family centered" support programs based on families' actual needs and preferences (Taylor, Racino et al., 1987). Wisconsin has a flexible voucher system, available in selected counties, that can fund a broad range of formal and informal supports needed by families. In addition to other family supports, a number of states now provide selected families with cash subsidies that can be spent on almost anything that will help maintain the child in the family. Michigan's family subsidy program currently provides $255 per month to over 2,000 families of children with severe developmental disabilities. Encourage Family Reunification All families cannot at all times maintain their children at home. Crises or other circumstances may require out-of-home placement. Historically, out-of-home placement of persons with developmental disabilities has been viewed as a permanent disposition. In many cases, agencies actually discouraged a family's involvement with a child after placement. As noted by Michigan's Department of Mental Health (1986):

We thought we were being helpful by relieving the

family of the responsibility and encouraging them

to separate from their child after placement. We

offered advice to not visit the child after placement

so that the family and child could adjust to the

separation. (p. 3)

Permanency planning recognizes the importance of and irreplaceability of family ties and, therefore, requires substantial effort to ensure ongoing parental contact after placement to facilitate family reunification. A major principle underlying permanency planning is that it is a very rare instance when a child is not better off in his or her natural family. It is, therefore, the responsibility of any agency involved with children and families to use its resources effectively to reunite families whenever feasible. Pursue Adoption For children whose ties to their families have been permanently broken, adoption is the option of choice in permanency planning. Once considered an unrealistic goal for many children, recent experience has demonstrated that adoptive families can be found for children with a range of developmental disabilities (Nelson, 1985). In Hartman's (1985) words: "Adoption, rather than a privilege for the perfect' infant, was reconceptualized as a right for all children who cannot find permanence with their biological families. The motto and the goal of adoption today has been expressed in the statement, No child is unadoptable' " (p. 59). Still, MR/DD agencies continue to set up obstacles to adoption. A review of one state's specialized foster care program found that mental retardation agencies not only do not pursue adoption, but may actively discourage foster families from adopting children in their homes (Taylor, Lutfiyya, Racino, Walker, & Knoll, 1986). Under the principles of permanency planning, for any child unable to be reunited with his or her natural family, an adoptive family would be the objective of choice for the agency serving the child's best interests. Explore Other Permanency Options Because of legal barriers or a family's continued involvement with a child, adoption is not always an option. In such instances, permanency planning directs attention to other options to ensure stability in children's lives. These options include "permanent" foster care, a court-sanctioned or informal agreement for a child to remain with a foster family until adulthood, or "shared care" or "co-parenting" in which a natural, or biological, and foster family share responsibility for raising a child. In addition, open adoption," in which a child's ties to his or her biological family are kept intact, is increasingly viewed as the most appropriate option for many children, especially older ones. Hartman (1985) stated, "Older children have memories, connections, important relationships. They have a past" (p. 73). DISCUSSION Today the orientation of services for children and youth with developmental disabilities stands at much the same place as child welfare stood 10 years ago. Then advocates drew attention to the antifamily bias of social services programs and demanded a change in legislation and agency practices. Numerous problems continue to surround child welfare services, but the permanency planning provisions of P.L. 96-272 established clear and important principles by which state and local agencies are expected to deal with situations in which children are in or at risk of out-of-home placements.

As a concept applied to programs for persons with developmental disabilities, permanency planning would call for major changes in both policy and philosophy guiding service provision. Instituting permanency planning for all children and youth will require attaining as many of the following objectives as possible: I . Secure a revision of P.L. 96-272, the Adoption

Assistance and Child Welfare Act of 1980, to

require the implementation of permanency planning

protections in all agencies of participating

states including those serving children and youth

with disabilities. 2. Create a federal requirement, perhaps through an

amendment of P.L. 96-272, for permanency

planning whenever federal program benefits are

used to purchase long-term out-of-home care for

children and youth including programs such as

Medicaid, P.L. 89-313-, and P.L. 94-142-funded

residential school placements, Supplemental Security

Income, and others). 3. Incorporate permanency planning in state and

local laws and regulations governing services for

children and youth with disabilities. 4. Shift state, local, and private agency philosophy

and practices toward: (a) more flexible and

individualized family support services to maintain

children at home; (b) stronger efforts at family

reunification for children placed out of home; (c)

more vigorous pursuit of adoption for children

whose ties to their families have been broken; and

(d) basic assurances of other family-based options

for children who cannot be reunited or be freed

for adoption designed to ensure stability of their

lives and enduring relationships with adults. 5. Secure a clear commitment on the part of all

persons, advocates, professionals, and policy-makers

to the proposition that all children and youth

should be assured the opportunity to grow up in

stable family situations, that family-like" alternatives

be used only when absolutely necessary

and for no longer than absolutely necessary, and

that public resources should be redirected toward

supporting children in families.

The concept of permanency planning raises fundamental questions regarding the place of people with disabilities in our society and our communities. It is a cultural expectation that children will live with their families. Only extraordinary circumstances call into question the nondisabled child's place in the family. For children with disabilities, however, the cultural standard has too often been waived. A universal permanency planning policy would mean that all children and youth, including those with developmental disabilities, would be provided with the greatest possible opportunity to enjoy and benefit from family living.
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Author:Taylor, Steven J.; Lakin, K. Charlie; Hill, Bradley K.
Publication:Exceptional Children
Date:Apr 1, 1989
Words:5059
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