Family Support

A check for quality

A family that has a son or daughter with mental

retardation or other disabilities may have needs

above and beyond those of other families. These

needs can often be met by family support programs

and services provided by state, local, notrfor-profit

or for-profit agencies. Family supports vary in type

and quality from state-to-state and even between

and within local communities.

Family support is often defined as "whatever it

takes" to increase the family's ability to care for

their child, improve the quality of the family's life

might prevent a son or daughter with a disability

from having to live outside his or her natural home.

Some examples of family supports are:

> Respite and child care

> Changes to the family's home or car

> Support services (counseling for families,

parent-to-parent support, self-help groups,

sibling groups, etc.)

> In-home assistance (to help with the personal

needs of the individual with a disability, to assist

with household chores, etc.)

> Personal futures planning for the whole family

> Financial or other types of assistance to meet

needs that may arise when a family member has

a disability

> Education and training for families to help them

develop skills to meet the needs of the family

member with a disability. This may include

providing the family with disability information

and/or advocacy training

> Information for families about all available

resources

> Service coordination/case management

> Recreation

> Assistance with programs that provide services

> Crisis intervention

> Special clothing

> Transportation to and from services

> Medical and dental services

> Testing

> Behavior intervention

> Any other support needed by the family

The goals of good family support should bes

> To keep families together (by providing

whatever it takes until the person with a disability

desires to or is able to live independently).

> To improve the caregiving ability of families and

to improve their ability to meet the many needs of

the family member with a disability.

> To respect cultural, economic, social and

spiritual differences.

> To help families find and use available

supports.

...and you know you are receiving good family supports when...

> you have time to work if you wish, spend time

with other family members or take part in

leisure activities.

> it is easier caring for your family member with a

disability at home.

> your family's emotional and physical well-being

increases.

> your family is able to use its money as other

people do.

> your family has better access to community

services such as doctors, dentists and recreation,

and you are more visible in your community.

The Arc a national organization on mental retardation

The Family Support Quality Checklist

Having many different family support services and programs is important. But it's also important to have

good quality family supports. For this reason. The Arc, as part of a project through the Minnesota Governor's

Planning Council on Developmental Disabilities, brought together parents, professionals and other experts on

family support to discuss and develop the questions below to help families know if they are receiving good

quality family supports.

How will this checklist help your family? Look at the questions below and think about the family supports

your family receives. Then check if your family supports Always, Sometimes or Never meet these signs of

good quality. Checking Always to each question shows a high quality of services and programs. However, a

lot of Never checks means that your family supports need improvement. And even family supports that

Sometimes meet these signs of quality may need to improve.

Join with The Arc and other disability groups to advocate for good quality family supports. Share this

information with other families, local service providers and government officials in your community!

Information and Planning

> Do you feel information is easily available in order to seek support?

> Is the paperwork to receive family support services simple to understand and fill out (e.g., easy to read, short application form, etc.)?

Is the family urged to be part of the planning for support services?

Does the family support service offer many different services, supports and

equipment to assist your family member?

> Are you given a choice of service providers?

> Is the information you receive from support service providers current and reliable?

> When a meeting of support providers is necessary, do you help decide who will attend the meeting and when it will be held? U > Does the family support program advertise its services in different languages and formats (e.g., easy-to-read for people who cannot read. Braille for people who are blind, etc)? __________________________________

Service Availability

> Can you get family supports when needed (e.g., can you make contact or receive

supports 24 hours a day)?

> Can you get to where the supports are provided or can the support services come

to you? D D

> Are services accessible (i.e., are people with mental and physical disabilities able to get to and use the services)?

> Are good quality services available regardless of where you live? > I Does the program obtain hard-to-find services for the family? > Does the family support service encourage the use of natural supports (i.e.,

neighbors, friends, relatives, community volunteers, etc.)?

> Can you get services whether or not the family can pay for them?

> Do you qualify for services based on your family member's disability and not just on your income? LJ > Can you get more services even if you are already receiving some family supports?

ALWAYS SOMETIMES NEVER

> If you are getting vouchers or cash payments for services, does the program > Does the program give the services at no or very low cost and not require you

to spend a lot of money to match or share the costs of services?

> Is the family support service available without causing the loss of other necessary family resources (e.g., income assistance, health benefits, etc.)? > Can you get supports that meet your family's unique needs which include

cultural, language and ethnic background? D > Does your family support program provide services during a crisis? > Are you urged to contact and meet with other parents (parent-to-parent networking)? U > Is advocacy skills training given (or available) for the entire family? Staffing

> Is there a single contact person to help you obtain services for your family?

> Are the supports provided by good staff who know about services and how to work with people with disabilities? > > > Does your service coordinator or case manager:accept and consider your ideas? act sincere and respectful toward you, and not judge you? D treat you like a partner instead of a "client"? > pay full attention during appointments and meetings? D

> show interest in what you think and say? D

> respond to your concerns? D > stand up for your family and not the service system? Q > arrange other services when necessary? D > Do providers carefully and dearly explain their services? > When the service providers come to your home, are they invited by you? > Are providers sensitive to and respectful of: your culture and lifestyle? > your verbal skills? > your family's needs and preferences? D > Do providers keep their promises about supports and services?

Program Values

> Does the support provider share ideas and beliefs about families/family supports?

> Does your support service build on your family's strengths and abilities? Does the family support service offer services that are not forced on your family? > Does your support give you hope for the future and raise your expectations? > Do you feel helped by the supports, not hurt by them? > Does the support service make the public aware of the abilities of people with disabilities?

Tips for Working with Family Supports

> Be informed about your rights.

> Think through both what you need and what you want

before meeting with potential service providers.

> Be persistent and firm about what you need and want.

> Bring along a friend when you meet with family support

service providers. Another person can help provide the

emotional support you may need. You can also enlist

support from family members or your local chapter of

The Arc.

> Advocate for family support providers. They may need

consumers like you to push for funding, changes in

regulations, etc.

> Let providers know when they've been helpful to you.

> Take notes during meetings to ensure there are no

misunderstandings later.

> Keep records, duplicate copies of forms, etc. from your

family support services.

For more information on family support, contact:

The Arc of the United States

1010 Wayne Avenue, Ste. 650

Silver Spring, MD 20910

301-565-3842

info@thearc.org

www.thearc.org

Family Support Forum Participants

In August of 1992, The Arc convened a consensus forum to

develop the information for this Family Support Qualify

Checklist. The group consisted of consumers, family

members and professionals including:

Susan Arneaud, Director, Family Support Subsidy Program,

Michigan Department of Mental Health, Lansing, Michigan

Mary Ellen Burdick, Director, ARC of Allegheny County Esprit

Program, Pittsburgh, Pennsylvania

Carlos Cordova, Parent, Arlington, Texas

Jim Gardner, Parent and President of The Arc, Shreveport,

Louisiana

Sally Gardner, Parent, Shreveport, Louisiana

Ed Guthrie, Executive Director, Orleans County ARC, Albion,

New York

Cindy Hatcher, Parent, Pittsburgh, Pennsylvania

Naomi Karp, Consultant, Human Services Research Institute,

Boston, Massachusetts

Shirley Reynolds, Sibling and board member of the New York

Planning Council On Developmental Disabilities, Renssealer, New

York

Fran Smith, Parent, forum facilitator and independent

consultant, Richmond, California

Sue Swenson, Parent, Minneapolis, Minnesota

Joan Thompson, Parent and President of The Arc of Ohio, New

Carlisle, Ohio

Rutherford TumbuU, Parent and Co-Director, Beach Center on

Families and Disability, The University of Kansas, Lawrence, Kansas

Colleen Wieck, PhJ)., Executive Director, Minnesota

Governor's Planning Council on Developmental Disabilities, St. Paul,

Minnesota

lids publication was supported in part by Contract Number 25200

under provisions of the Developmental Disabilities Act of 1991

(P.L. 101-496) from the Minnesota Department of Administration,

Governor's Planning Council on Developmental Disabilities. The

views expressed herein do not necessarily reflect the position or

policy of the Governor's Planning Council on Developmental

Disabilities nor that of the Minnesota Department of

Administration.

The Arc of the United States

1010 Wayne Avenue, Ste. 650

Silver Spring, MD 20910

301-565-3842

info@thearc.org

www.thearc.org

Your child's age

15 to 18 Months

Uses 10 to 15 words

spontaneously...................................

Scribbles on paper after shown

how...........................................................

Begins using a spoon.........................

Drinks from cup held in both

hands .....................................................

Cooperates with dressing...............

Walks across a large room.............

18 to 24 Months

Can build a tower with three

blocks ...................................................

Likes to climb and take things

apart......................................................

Uses single words frequently....

Begins two-word phrases.............

Able to run...............................................

Looks at pictures in a book........

2 to 3 Years

Walks up/down stairs using

alternate feet, while holding on..

Says at least 100 words .............................

Uses three-word phrases.........................

Points to objects in a book.....................

Knows his or her sex/ body parts.....

Jumps lifting both feet off ground...

Your child's

age

3 to 4 Years

Opens a door by turning the door

knob.................................................................

Builds a tower with nine blocks .......

Follows two commands of on/

under/ or behind (e.g./ "stand

on the rug/') ..............................................

Names pictures in a book or

magazine.....................................................

Understands complex sentences......

Uses action words ..............................'.........

4 to 5 Years

Uses four- to five-word sentences.

Stands on one foot....................................

Throws a ball overhand ........................

Enjoys active play: racing/

hopping/ climbing .............................

Points while counting three

different objects....................................

Names three colors...................................

Counts aloud 1 through 10 ................

Can copy a cross.........................................

5 to 6 Years

Can copy a square....................................

Asks questions to seek

information .............................................

Tells age correctly.......................................

Skips with both feet...............................

Catches a small ball on a bounce

Dresses him/herself completely....

The Arc a national organization

on mental retardation

Developmental Checklist for Young Children

This checklist is designed for you to

record your child's growth and

development. There is space to fill in the

age when your child begins each

activity.

When you fill in the checklist, remember

that each child develops at his or her own

pace. The age listed on the checklist is the

time a number of children are

consistently doing the activity.

If your child is not doing one activity at

the age listed, there is probably no need

to be concerned. However, if your child is

late in doing several activities, you

should discuss it with your child's doctor.

If your child was bom prematurely, ask

the doctor about your child's corrected

developmental age.

For more information about

The Arc's work in your

community contact:

The

The Arc of the United States

101 OWayne Avenue, Ste. 650

Silver Spring, MD 20910

301-565-3842

info@thearc.org

www.thearc.org

Your child's

age

Usual Activities

During...

Birth to 3 Months

Able to raise head from surface

when lying on tummy.................

Makes eye contact with adults...

Moves arms and legs in

energetic manner............................

Smiles and coos ......................................

Grunts and sighs ...................................

Likes to be held and rocked.........

3 to 5 Months

Eyes follow a slow-moving object..

Able to hold head erect..........................

Grasps objects when placed in his

or her hand ..............................................

Laughs out loud ...........................................

Anticipates feeding and

recognizes familiar faces.................

Sits briefly with support........................

5 to 7 Months

Reaches for, holds and bangs

objects...............................................................

Stretches out arm to be picked up....

Babbles ...................................................................

Turns toward sounds .................................

Holds cookie or cracker - begins

chewing..........................................................

Rolls over...........:........;...............;..............;..,.....

Your child's

age

7 to 9 Months

Can sit steadily for about five

minutes.........................................................

Can transfer object from one hand.

to the other .................................................

Creeps (pulling body with arms

and leg kicks) ............................................

Responds to name ........................................

Can stand for short time holding

on to support............................................

Likes to play peek-a-boo.........................

9 to 12 Months

Says "Ma-ma" or "Da-da"...................,

Copies sounds...............................................

Waves "hi" and "bye".............................

Able to pull self up at side of crib

or playpen..................................................

Walks holding on to furniture .......

Takes sips from a cup..............................

Crawls on hands and knees..............

Hits two objects together; throws

and drops objects ................................

12 to 15 Months

Says several words besides

"Ma-ma/Da-da"............................

Walks without support by 15

months..................................................

Finger feeds self...................................

Explores toys..........................................

January 1998 Pub. #10-5

AMERICAN ACADEMY OF PEDIATRICS

CLINICAL REPORT

Guidance for the Clinician in Rendering Pediatric Care

Chris Plauche Johnson, MD, MEd; Theodore A. Kastner, MD, MS; and the

Committee/Section on Children With Disabilities

Helping Families Raise Children With Special Health Care

Needs at Home

ABSTRACT. One goal of Healthy People 2010 is to re®

duce the number of people with disabilities in congregate care facilities, consistent with permanency-planning

principles, to 0 by 2010 for persons aged 21 years .and

under (objective 6-7). Congregate care, in this regard, is

defined as any setting in which 4 or more persons with

disabilities reside, regardless of whether the residence is

located in the community, such as a school, group home,

nursing facility, or institution. Although this particular

public health objective may reflect an unfamiliar concept

for some pediatricians, the American Academy of Pedi®

atrics supports the goals and objectives of Healthy People

2010 as well as the medical home and the provision of

community-based, culturally effective, coordinated, and

comprehensive care for children with special health care

needs and their families. To advise families caring for

children with special health care needs effectively, the

pediatrician should be familiar with the principles of

permanency planning and well informed of local family-

support services. The pediatrician should also work with

the family to identify the range of long-term supports

and services available for their child. These supports may

include respite for biological families as well as various

additional parenting models such as shared parenting,

foster care, alternate parents, and adoption. Although

family-based supports are preferable, families may con®

sider other out-of-home placements including group

homes, placement in a nursing facility, or other forms of

institutional care when sufficient family-based services

are not available. Once all the options are understood,

issues regarding quality of care can be individualized

and judged by the parent or guardian, in close collabo®

ration with the pediatrician and other professionals with

expertise in permanency planning and long-term sup®

ports and services.

The purpose of this clinical report is to educate physi®

cians on the philosophy of providing a permanent family

environment (permanency planning) for all children, in®

cluding those with special health care needs, and the

importance of adequate and accessible community ser®

vices to support and maintain the well-being of all

family members. Pediatrics 2005;115;507-511, children

with special health care needs, family support, perma®

nency planning, special-needs adoption, deinstitutional-

The guidance in this report does not indicate an exclusive course of treat®

ment or serve as a standard of medical care. Variations, taking into account

individual circumstances, may be appropriate.

doi:10.1542/peds.2004-2520

emy of Pediatrics.

ization, medical home, foster care. Healthy People 2010,

transition, self-determination.

STATEMENT OF THE PROBLEM

Most parents desire to raise their children*

with special health care needs at home.

However, sometimes individual circum®

stances and societal factors strain the family's ability

to provide for their child's special needs. Advanced

medical care and sophisticated technology have

made it possible for more children with special

health care needs to survive into adulthood, often

with chronic illness and disability. Family structure

and patterns of family life have changed dramati®

cally in the last 2 decades. More and more children

(including those with special health care needs) are

living in single-parent households. More mothers are

in the workforce, and at the same time there has been

a decline in the purchasing power of the family

income.1 A growing number of children are living in

poverty. Social isolation secondary to the additional

caregiving demands imposed by the child's condi®

tion coupled with an increase in residential mobility

often separates families from their extended families

and natural support systems.

A family's requirement for community supports

depends not only on the characteristics of the

child (ie, the degree of supervision, habilitation, and

health care needed) but also on structural (eg, single-

parent household), functional (eg, coping strategies),

and external (eg, income and work schedules) char®

acteristics of the family.2 Resources available to

families can be conceptualized along 4 levels of sup®

port (as shown in Fig. I).3 The family is the child's

best resource. The second ring represents the fami®

ly's natural supports and includes extended family

members, neighbors, and friends. The third ring rep®

resents informal supports, which include social net®

working with other families through various support

groups, community organizations, specialty clinics,

and, most recently, the Internet. The outer ring rep®

resents formal supports (financial, legal, and health

insurance benefits, respite waiver vouchers, and

early intervention and special educational programs)

* &> accordance with the policies of the American Academy of Pediatrics,

references to "child" and "children" in this document include infants

children, adolescents, and young adults up to 21 years of age.

PEDIATRICS Vol. 115 No. 2 February 2005 507

Fig 1. Levels of support for families of children with special health

care needs (modified from J Dev Behav Pediatr. 1994;15:117-119).

to which families of children with special health care

needs are entitled.

THE PHILOSOPHY OF PROVIDING A PERMANENT

FAMILY ENVIRONMENT (PERMANENCY

PLANNING)

Permanency planning is the philosophy and practice of securing for children with special health care

needs permanent family placements and ongoing

relationships with caring adults.4'5 Permanency planning emphasizes the use of supports necessary to

enable a child to be raised in a home, focuses on

promoting a sense of belonging, and is evaluated

according to the ability of the setting to promote

ongoing, secure relationships. Permanency planning

philosophy can be contrasted against "placement

strategies," which emphasize delivery of services,

focus on location, and are evaluated according to

competence of care providers.6

Central to permanency planning is the belief that

all children, regardless of the presence of a disability,

belong in families. Permanency planning may entail

supporting the birth family, recruiting a temporary

family placement during a crisis, recruiting an alter®

native family when adequate supports for the birth

family are rejected by the family or are not available,

and, ultimately, helping the family and child transition to an adult community-based independent-living environment. When an alternative family is necessary, it could be a foster family, an adoptive family,

or a shared-parenting family. A shared-parenting

family operates similarly to shared parenting by divorced parents with blended families and may include 1 of the following 3 arrangements: (1) the birth

family plus an extended family share parenting responsibilities; (2) the birth family plus an unrelated

family share parenting responsibilities; or (3) 2 unrelated families share parenting responsibilities.

Also, adoptive families are available for children

with a range of severe disabilities.6'7 A limited number of studies on the topic have revealed generally

positive perceptions and experiences of adoptive

family members in the short term.8-9 For example, in

a study of 56 adoptions completed by families, Glidden concluded that all but 5 were successful as

measured by a variety of outcomes. However, the

children had only been living with these families for

an average of 25 months when data were collected.

There is only 1 long-term study of outcomes for

children with disabilities who were adopted. Glidden and Johnson conducted a follow-up study of 42

adoptive families of children with special needs.

Twenty-one families (50% of the original sample)

were lost to follow-up. Of the remaining 21,16 of the

adoptees were still living at home. "The remaining 5

had left home, as older teens and young adults, and

moved to residential schools or training centers or

independent group residences. Because these moves

were made to age-appropriate settings, these cases

were not considered to be adoption disruptions.

Only one child left home before age 17 and one after

age 21; the others left at an average age of 20. The

four individuals living away from home were still

considered to be part of their families at the current

follow-up."10

Glidden and Johnson also looked at changes in

family function over time. They found that families

frequently identified the benefits of adoption as giving and receiving love, positive child characteristics,

pride in child's achievements, and happiness. Families less frequently reported problems including negative child characteristics, worry, anxiety or guilt,

developmental delay, family disharmony, and lack

of emotional bonding. Over time, there was a statistically significant worsening of family stress, particularly items related to family or parent problems and

pessimism.10

The findings of this study may reflect the stress

that accompanies the challenge of caring for a child

with special health care needs and may validate the

need to make. sufficient family-support services

available. The long-term follow-up demonstrated

that family stress can increase over time when caring

for a child with disabilities. On the other hand, the

fact that 5 adoptees moved into residential settings

outside the home may be a reflection of the individuals' exercising their right to self-determination and

transitioning to adult independent-living settings.

This situation would not necessarily be inconsistent

with Healthy People 2010 objective 6-7 (reduce the

number of people with disabilities in congregate care

facilities, consistent with permanency-planning principles, to 0 by 2010 for persons aged 21 years and

under).11 More studies of long-term outcomes are

needed.

For additional information regarding the importance of establishing a child's attachment to caregivers in general, see the American Academy of Pediatrics policy statement "Developmental Issues for

Young Children in Foster Care."5

THE IMPORTANCE OF FAMILY SUPPORT

Permanency planning is not synonymous with

family support. Permanency planning focuses on the

508 RAISING CHILDREN WITH SPECIAL HEALTH CARE NEEDS AT HOME

The developmental needs of the child, whereas family

support focuses on the needs of the entire family to

provide an environment conducive to the child's

need for permanency. In so doing, family supports

attempt to strengthen the family unit in the community while preventing alienation and family dysfunction.1 Family supports may include providing cash

stipends, delivering services (child care, respite,

transportation, home modifications, durable medical

equipment, behavior-management training, crisis intervention, faith-based services, assistance with transition to adult group homes, etc), and other supports

that promote family well-being. In the context of

permanency planning, family support may be seen

as a means to achieve a permanent placement for the

child and facilitate the philosophy of permanency

planning.

Indeed, there have been major shifts in services for

children with special health care needs over the past

50 years.4 A strong parent movement that initiated

the move toward deinstitutionalization and free public education for children with special health care

needs was started in the 1950s. Whereas the early

efforts focused on the person with the disability, later

momentum was focused on supporting the family.

Several laws and funding streams were created to

increase community supports for families raising

their child with special health care needs at home. In

1974, the Supplemental Security Income (SSI) pro®

gram became the cornerstone of national commitment to support youth with disabilities by providing

financial aid to their families. In 1975, federal education laws (Education for All Handicapped Children

Act [Pub L No. 94-142]) ensured that all children

regardless of their disabilities or special needs were

entitled to a free and appropriate public education.

These laws were amended in the 1980s and 1990s to

be more inclusive by extending services to children

from the time of birth or diagnosis.

The Adoption Assistance and Child Welfare Act

(Pub L No. 96-272 [1980]) expressed as legislation

the set of permanency-planning principles that

emerged in the 1970s for children removed from

their homes because of abuse and/or neglect. Addi®

tionally, it established a new Title IV-E of the Social

Security Act to provide federal matching funds for

adoption subsidies for "special needs children" in

out-of-home placements.12 However, this law is

problematic in that it applies only to public welfare

systems and not to agencies serving individuals with

mental retardation and developmental disabilities.

Because only approximately 20% of children with

mental retardation and developmental disabilities

are placed in foster care through the child welfare

system, most children with mental retardation and

developmental disabilities were not included under

the protections of this law.12

In 1981, the Tax Equity and Fiscal Responsibility

Act of 1982 (Pub L No. 97-248), also known as the

Katie Beckett Act, provided a variety of supports,

including monetary assistance, to parents so that

they could hire trained care providers to receive

periods of rest (respite). Respite is regarded by many

parents as one of the most important supports necessary to continue to care for a child with special

health care needs at home. The Support for Families

of Children With Disabilities Act of 1994 (Pub L No.

103-322, Part 1) provided additional means to re®

unite families of children with disabilities who had

been placed out-of-home.13 Finally, pending legislation such as the Family Opportunity Act of 2003 and

the Lifespan Respite Care Act of 2003 may further

expand options and services for children with special

health care needs. Although this report targets fam®

ily supports, the willingness and/or ability of the

local school system to respond adequately to the

child's education, rehabilitation, nursing, and behav®

ioral needs certainly influences the experience of

families of children with special health care needs.

These issues can be addressed when schools have

access to technical assistance, consultation, and sup®

port, but this may not be the case in some commu®

nities. When these systems fail, families may feel

pressured to look outside their community, even to

residential settings, to find other resources (although

they are not necessarily failing to provide the needed

home supports).

Although all states now have family-support pro®

grams, few states have allocated adequate funds, and

long waiting lists exist. Furthermore, depending on

the state, supports may be withdrawn or decreased

when the child transitions to adulthood. Despite tre®

mendous relative advances, spending for family sup®

port still constitutes only a small portion of most

state budgets for mental retardation and develop®

mental disabilities services. Overall, the United

States spends $2.4 billion annually on family sup®

port, which accounts for only 2.8% of total develop®

mental disability funding. In fact, only 5 states have

allocated more than 5% of their total mental retarda®

tion and developmental disabilities budgets for fam®

ily supports.14

For additional information regarding family sup®

ports in general, see the American Academy of Pe®

diatrics policy statement "The Pediatrician's Role in

Family Support Programs."! For information regard®

ing additional challenges encountered as the child

transitions through adolescence and adulthood, see

the Pediatrics supplement "Improving Transition for

Adolescents With Special Health Care Needs From

Pediatric to Adult-Centered Health Care."15

SUMMARY

To support and achieve Healthy People 2010 objec®

tive 6-7 (reduce the number of people with disabil®

ities in congregate care facilities, consistent with per®

manency-planning principles, to 0 by 2010),11

pediatricians should work closely with biological

families to identify local resources that can assist

them in caring for their child with special health care

needs to prevent out-of-home placement. If, how®

ever, the family considers out-of-home placement,

the pediatrician should be knowledgeable of and be

able to recommend other alternatives and supports

and convey this information to the family to rein®

force the principles of permanency planning and

achieve and sustain an optimal nurturing environ®

ment for the child.

AMERICAN ACADEMY OF PEDIATRICS 509

CONSIDERATIONS FOR PEDIATRICIANS

1. The goal of the medical home is consistent with

Healthy People 2010 objectives and includes the

provision of community-based, culturally effective, coordinated, and comprehensive care for

children with special health care needs and their

families.16

2. The ongoing assessment of children with special

health care needs ideally is family-centered, focusing on the child's quality-of-life goals as envisioned by the family. Ultimately, assessments will

focus on the child as he or she matures into adolescence and adulthood and prepares for transition to adult living settings.

3. Throughout the ..ongoing care of the child, the

pediatrician is encouraged to support the tenets of

permanency planning. Permanency planning is

the philosophy and practice of securing for chil®

dren with special health care needs permanent

family placement and ongoing relationships with

caring adults. Permanency planning emphasizes

the use of supports necessary to enable a child to

be raised in a home, focuses on promoting a sense

of belonging, and is evaluated according to the

ability of the setting to promote ongoing secure

relationships.

4. The pediatrician is encouraged to address the

child's need for and the availability of an appro®

priate education, including later transition ser®

vices. If the child is not being served appropriately

by the local school system, physician advocacy

may be necessary to both obtain the needed ser®

vices and decrease the burden on parents in their

own efforts to secure them.

5. The pediatrician is encouraged to address the par®

ents' need for and ability to access and obtain

family-support services, including faith-based ser®

vices. If parents are in need of family-support

services but have not been successful in accessing

them, the pediatrician may advocate on behalf of

the family through referral to social service agen®

cies, which are usually housed in state agencies

(ie, state departments of health, human services,

mental retardation and/or disability, or education).

6. Pediatricians are encouraged to advocate for the

most reasonable and appropriate supports and

services. The measure of what is reasonable and

appropriate should always be in the best interest

of the child. If, after careful consideration, the

family determines that congregate care is the only

available option, it should be considered a temporary placement followed by reunification or an

in-home alternative-care option whenever possible. Pediatricians also are encouraged to help adolescents prepare for transition to adulthood and

advocate for self-determination as some adults

may choose to pool resources and share attendant

care in group home settings.

7. Pediatricians/ especially those in states that have

not yet accessed waiver services through the Tax

Equity and Fiscal Responsibility Act (Katie Beckett Act), can be effective advocates for increased funding for family supports by working collaboratively with legislators to access and match federal resources. The public policy link on the Family Voices Web site (www.familyvoices.org/Policy/home.htm) is helpful in providing the

clinician with information about important proposals to Congress that relate to permanency

planning and family supports.

8. Pediatricians can be helpful in identifying possi®

ble alternative families. Good prospects are fami®

lies already caring for a child with special health

care needs, foster parents of typically developing

children, and parents who work in the health care

fields. Pediatricians can also be helpful in educat®

ing and training care providers.

COMMITTEE ON CHILDREN WITH DISABILITIES,

2004-2005

Paul H. Lipkin, MD, Chairperson

Joshua Alexander, MD

J. Daniel Cartwright, MD

Larry W. Desch, MD

John C. Duby, MD

Diane R. Edwards, MD

Ellen Roy Elias, MD

Chris Plauche Johnson, MD, MEd

Lawrence C. Kaplan, MD

Eric B. Levey, MD

Nancy A. Murphy, MD

Scott M. Myers, MD

Ann Henderson Tilton, MD

Adrian D. Sandier, MD

Immediate Past Chairperson

W. Carl Cooley, MD

Past Committee Member

Theodore A. Kastner, MD, MS

Past Committee Member

Marian E. Kummer, MD

Past Committee Member

LIAISONS

Beverly Crider

Family Voices

Merle McPherson, MD, MPH

Maternal and Child Health Bureau

Donald Lollar, EdD

Centers for Disease Control and Prevention

Marshalyn Yeargin-Allsopp, MD -

Centers for Disease Control and Prevention

CONSULTANTS

Colleen Horton, MPAff

Nancy Rosenau, PhD

Lesa R. Walker, MD, MPH

STAFF

Stephanie Mucha, MPH

REFERENCES

1. American Academy of Pediatrics, Committee on Early Childhood,

Adoption, and Dependent Care. The pediatrician's role in family sup®

port programs. Pediatrics. 2001;107;195-197

2. Johnson CP, Blasco PA. Community resources for children with special

healthcare needs. Pediatr Ann. 1997;26:679-686

3. Cooley W. The ecology of support for caregiving families. / Dev Behao

Pediatr. 1994;15:117-119

4. Bergman AI, Singer GH. The thinking behind new public policy. In:

Singer GHS, Powers LE, Olson AL, eds. Redefining Family Support:

Innovations in Public-Private Partnerships. Baltimore, MD: Paul H.

Brookes; 1996:435-460

510 RAISING CHILDREN WITH SPECIAL HEALTH CARE NEEDS AT HOME

5. American Academy of Pediatrics, Committee on Early Childhood,

Adoption, and Dependent Care. Developmental issues for young chil®

dren in foster care. Pediatrics. 2000;106:1145-1150

6. Rosenau N. Do we really mean families for all children? Permanency

planning for children with developmental disabilities. In: Policy Research

Brief. Vol 11, No. 2. Minneapolis, MN: Research and Training Center on

Community Living, Institute on Community Integration, College of

Education and Human Development, University of Minnesota; 2000

7. Nelson KA. On the Frontier a/Adoption: A Study of Special-Needs Adoptive

Families. New York, MY: Research Center, Child Welfare League of

America; 1985

8. Glidden LM. Parents for Children, Children for Parents: The Adoption

Alternative. Washington, DC: American Association on Mental

Retardation; 1989

9. Flaherty D, Glidden L. Positive adjustments in parents rearing children

with Down syndrome. Early Educ Dev. 2000,11:407-422

10. Glidden LM, Johnson VE. Twelve years later: adjustment in families

who adopted children with developmental disabilities. Ment Retard.

1999^7:16-24

11. US Department of Health and Human Services. Healthy People 2010. 2nd

ed. With Understanding and Improving Health and Objectives for

Improving Health. Washington, DC: US Government Printing Office;

2000

12. Taylor S, Lakin KC, Hill BK. Permanency planning for children and

youth: out-of-home placement decisions. Except Child. 1989;55:541-549

13. Agosta J, Melda K. Supporting families who provide care at home for

children with disabilities. Except Child. 1995;62:271-282

14. Parish S, Pomeranz A, Hemp R, Rizzolo MC, Braddock D. Family

support for families of persons with developmental disabilities in the

US: status and trends. Policy Research Brief: The College of Education and

Human Development. Minneapolis, MN: University of Minnesota Press;

2001:12

15. Blum RW, ed. Improving transition for adolescents with special health

care needs from pediatric to adult-centered health care [published

correction appears in Pediatrics. 2003;111:449]. Pediatrics. 2002;110(6

suppl):1301-1335

16. American Academy of Pediatrics, Medical Home Initiatives for Chil®

dren With Special Needs Project Advisory Committee. The medical

home. Pediatrics. 2002;110:184-186

All clinical reports from the American Academy of Pediatrics

automatically expire 5 years after publication unless

reaffirmed, revised, or retired at or before that time.

AMERICAN ACADEMY OF PEDIATRICS 511