A FActSheet 

For FAmilieS
Ê

July 1999 

Adopting Children 

With Developmental 

Disabilities 

The estimates of children who are awaiting adoption (legally free) indicate that anywhere between 

30 and 50% have a developmental disability. 

However, these children are not a homogeneous 

group. Their physical, cognitive and social characteristics may differ considerably. Each child’s diagnosis and/or classification are coupled with their 

individual uniqueness. Children with developmental disabilities, like all children, benefit from the 

What’s inside: 

• What is a developmental disability? 

• Types of disabilities 

• Challenges of adopting a child with developmental disabilities 

• What parents say 

• Sources of support and information 

U.S. Department of Health and Human Services 

Administration for Children and Families 

Administration on Children, Youth and Families 

Children’s Bureau 

Child Welfare Information Gateway 

Children’s Bureau/ACYF 

1250 Maryland Avenue, SW 

Eighth Floor 

Washington, DC 20024 

703.385.7565 or 800.394.3366 

Email: info@childwelfare.gov 

www.childwelfare.gov 
 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Adopting Children With Developmental Disabilities www.childwelfare.gov 

love and stability that come from belonging 

to permanent families. 

Families adopting children with developmental disabilities often have different motivations from those adopting healthy infants. 

Couples faced with infertility, who choose 

adoption as an option, are looking for a 

healthy baby and the opportunity to create 

their family. However, adoptive parents 

seeking children with disabilities have different goals and characteristics. These adoptive 

parents tend to already have large families 

with many biological children and/or other 

adopted or foster children. They see themselves as successful parents equipped with 

the special skills necessary to parent a “challenged” child. These adoptive families also 

tend to have had previous experience with 

health care professionals, school systems and 

administrators that helps them to navigate 

systems to advocate on behalf of their children. The parents know from their personal 

experience that every child is different and 

that all children have at least one difficulty— 

some are just more serious than others. The 

motivation shifts for these families from 

wanting to adopt infants to form a family 

to providing for the quality of life for additional family members. 

Families who have adopted children with 

developmental disabilities talk about the 

“incredible joy” the children bring to them. 

They describe them as having enriched 

their families in ways they could never have 

imagined. Parents derive tremendous satisfaction from helping their child make developmental gains and each accomplishment 

is a cause for celebration. However, parents 

must also balance the fine line between following their protective instincts and helping 

their child achieve greater independence. 

What is a Developmental 

Disability? 

According to the Federal Developmental 

Disabilities Act of 1984, Public Law 98-57, 

Sec. 10(7), a developmental disability is a 

severe, chronic disability which: 

• is attributable to a mental or physical 

impairment or combination of mental 

and physical impairments; 

• is manifested before age ; 

• is likely to continue indefinitely; 

• results in substantial functional limitations in three or more of the following 

areas of major life activity: 

»	 self-care 

» receptive and expressive language 

» learning 

» mobility 

»	 self-direction 

» capacity for independent living 

» economic sufficiency 

• reflects the person’s need for a combination and sequence of special, interdisciplinary, or generic care, treatment, or 

other services which are of lifelong or 

extended duration and are individually 

planned and coordinated. 

Within each disability there is a range in 

conditions from mild to severe. Several 

handicapping conditions are most associated with developmental disabilities—two 

of which, mental retardation and cerebral 

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Adopting Children With Developmental Disabilities www.childwelfare.gov 

palsy, affect the most children with the 

greatest severity. 

types of Disabilities 

mental retardation 

Mental retardation is impaired or incomplete mental development. Usually a lifelong condition occurring at or near birth, it 

may be treated through educational techniques, but is not cured. More than 00 

specific causes of mental retardation have 

been identified; together they account for 

less than half of all cases, underscoring the 

need for greater knowledge in this field. 

There are four classes of mental retardation: mild, moderate, severe, and profound. 

People who have mild mental retardation 

and function in the educable range can 

achieve competitive employment on a 

semiskilled or unskilled level with minimal 

support. They may need guidance in crisis 

situations, but can participate as fully contributing members of society in the mainstream of community life with jobs, independent living, cars and their own families. 

People who have moderate mental retardation and function in the trainable range 

may achieve self-maintenance in unskilled 

or semiskilled work under sheltered conditions. They need supervision and guidance 

when under mild social or economic stress 

and must live in group homes, family situations or assisted living settings. 

People who have severe mental retardation 

may contribute partially to self-maintenance 

under complete supervision. They can 

develop self-protection skills to a minimally 

useful level in a controlled environment. 

People who have profound mental retardation have some motor and speech development. They may achieve limited self-care 

and need nursing care. 

Down Syndrome 

Down syndrome is a form of mental retardation in which the child is born with an extra 

chromosome. It occurs in approximately 

1 of every 800 births. There are more than 

50 characteristics that identify a child with 

Down syndrome—the most prominent 

being slanted eyes, short stature, and poor 

muscle tone. No child has all 50 characteristics, and, contrary to popular thinking, very 

few have severe mental retardation. 

Children with Down syndrome exhibit a 

wide range of mental development with 

most in the mildly to moderately delayed 

category. They commonly have respiratory 

infections and congenital heart disease. 

Fortunately, many heart defects are treatable now; some even can be corrected 

without surgery. 

Current research with computers shows that 

children with Down syndrome understand 

more than they verbalize. This may mean 

that there is a vast, untapped potential 

that can be explored and nurtured, since 

it is known that learning in these children 

continues through adolescence. In addition, 

there is evidence that as more children with 

Down syndrome are raised in families where 

they receive individual attention, they 

will accomplish more than once thought 

possible. 

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cerebral Palsy 

A catch-all term, cerebral palsy refers to a 

group of conditions resulting from brain 

damage before, during, or shortly after birth. 

It is not hereditary and is often attributed 

to a lack of oxygen to the brain. The most 

obvious symptom is an inability to coordinate or control muscles; children with 

cerebral palsy lack muscle control in one or 

more parts of their bodies. Children whose 

conditions are more serious may experience other symptoms, such as convulsive 

disorders, limited general intelligence, and 

problems in thinking, expressing thoughts, 

speaking, hearing, and seeing. Some children who have serious limb involvement 

attend orthopedic schools (part of the public 

school system) where occupational and 

physical therapy are part of the curriculum. 

While cerebral palsy is a permanent disability that cannot be cured, many people 

with the condition experience no limitation to their abilities to achieve. Many have 

risen high in the fields of medicine, law, 

education, and writing. Some people with 

cerebral palsy have completed the New York 

Marathon race. These are cases in which 

mental function has not been impaired. 

Autism 

Autism is a distinct developmental brain 

disorder with both physical and behavioral 

components. It affects the brain areas controlling language, social interaction and 

abstract thought. About one in every one 

thousand people are autistic. The symptoms 

vary greatly, but usually become apparent by two or three years of age and affect 

males more often than females. People with 

autism share a common problem of having 

difficulty expressing what they mean or 

sometimes cannot speak. Emotional problems and mental retardation can also be 

present. Individuals with autism are usually 

very sensitive to sensory stimuli and are 

often overwhelmed by ordinary sounds, 

sights, smells and touch. 

The cause of autism is still unclear, although 

the most widely accepted explanation is a 

combination of genetic factors and damage 

affecting the part of the brain that processes 

and interprets information. Autistic youngsters are often described as being “in a shell” 

or “living in a world all their own.” 

While autism is considered a life-long condition, good educational training and programs reduce the severity of its symptoms. 

Occupational therapy, speech and language 

therapy, and medication are sometimes 

helpful. In the cases where retardation is 

accompanied by normal or superior skills 

(as in arithmetic, music, or memory), these 

skills can be expanded. 

epilepsy 

There are many definitions of epilepsy. 

Generally, the term, which comes from the 

Greek word for “seizures,” is applied to a 

number of disorders of the nervous system 

centered in the brain. Seizures of one kind 

or another are the primary characteristics or symptoms of all forms of epilepsy. 

Not all seizures, however, are epileptic in 

nature. Seizures are characterized by one or 

more of these symptoms: convulsions of 

the body’s muscles, partial or total loss of 

consciousness, mental confusion, or disturbances of bodily functions which are usually 

controlled automatically by the brain and 

nervous system. 

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There is no known cause of epilepsy. 

Scientists generally agree that epilepsy can 

result from defects in the brain; brain injury 

before, during, or after birth; head wounds, 

chemical imbalance, poor nutrition, childhood fevers, some infectious diseases, brain 

tumors, and some poisons. But sometimes 

the cause cannot be found. 

Strictly speaking, epilepsy is not curable, but 

it is highly treatable. It can be controlled in 

varying degrees by careful use of medicines 

(up to 50% of those affected can achieve 

complete control, and 30% partial control of 

their seizures). 

In most cases, people with epilepsy have the 

same general range of intelligence as other 

people. Only occasionally do uncontrolled 

seizures during childhood affect mental 

capacity. A brain injury or disorder of the 

central nervous system, which caused epilepsy, may also cause other conditions that 

affect mental development, for example, 

mental retardation or cerebral palsy. 

Spina Bifida 

Spina bifida is a birth defect involving the 

nervous system. It occurs when the vertebral 

bony units that cover and protect the spinal 

cord do not develop fully. The spinal cord 

fails to form a tube and send out enough 

nerve fibers to the muscles below. As a 

result, the lower extremities and the lower 

part of the tube are affected in various ways. 

A child may not be able to move his legs, 

may not feel heat, touch, or pain, and may 

not be able to achieve bowel and bladder 

control. Many children, however, are able 

to walk unaided. Others require braces and 

crutches; still others are restricted to wheelchairs. The bowel and bladder function, but 

are commonly susceptible to infection. 

Frequently, a problem called hydrocephalus accompanies spina bifida, which is an 

abnormally rapid and excessive enlargement of the head caused by fluid backup. 

Immediate treatment calls for insertion of 

a shunt or tube to drain fluid off the brain. 

Once a shunt has been properly inserted, 

the hydrocephalus seldom causes further 

problems. Shunting has also proven effective in preventing hydrocephalus. This 

procedure is critical – not only for cosmetic 

purposes, but also to prevent brain damage 

which often is a result of the increased 

pressure. Early damage can result in mild 

or even severe retardation. Many children 

with spina bifida are of average or higher 

intelligence. 

Acquired immune Deficiency 

Syndrome (AiDS) 

Acquired Immune Deficiency Syndrome 

(AIDS) is a disorder that slowly destroys the 

body’s immune system, leaving it incapable 

of fighting off disease. It is caused by the 

Human Immunodeficiency Virus (HIV). 

Both children and adults can contract the 

virus from blood transfusions. AIDS is not 

transmitted by casual contact. Because there 

is no cure yet, AIDS is the most serious 

disease a child can acquire. Because of new 

drug treatments, however, children who are 

HIV positive can live for a number of years. 

The HIV virus can be transmitted to the 

infant from the mother during pregnancy, 

birth or breastfeeding. About 0 - 5% of 

infants born to HIV infected mothers run 

the risk of contracting the virus. Mothers 

can reduce the risk of infection by: using 

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Adopting Children With Developmental Disabilities www.childwelfare.gov 

AZT or other antiviral drugs during the 

last six months of pregnancy; keeping the 

delivery time short (the possibility of a 

cesarean section (C-section) birth); and not 

breast feeding the baby. When AZT is used 

during pregnancy, the risk of transmitting 

HIV drops from 5% to 8%. Recent evidence 

also suggests that the newborn be given AZT 

for six weeks after birth. Even if the mother 

does not take AZT during the pregnancy, 

the risk of transmission is less if the baby is 

given AZT within two days of birth. Most 

babies born to infected mothers test positive 

for HIV at birth. However, testing positive 

means the HIV antibodies are found in 

the blood. Babies get HIV antibodies from 

their mother even if they are not infected 

with the virus. If babies are infected with 

HIV, their own immune systems will start 

to make antibodies and they will continue 

to test positive. If they are not infected, the 

mother’s antibodies will gradually disappear 

and the babies will test negative after about 

 to 1 months (New Mexico AIDS InfoNet). 

Even though an infant has two or more 

negative HIV antibody tests, the National 

Pediatric HIV Resource Center recommends 

a final HIV antibody test at 4 months of 

age for the HIV-exposed infant (American 

Academy of Pediatrics). 

Fetal Alcohol Syndrome/ 

Fetal Alcohol effect 

Fetal Alcohol Syndrome (FAS) refers to a set 

of physical and mental birth defects found 

in babies whose mothers drank alcohol regularly and heavily during their pregnancy. 

Fetal Alcohol Effect (FAE) is a milder version 

of birth defects found in some babies of 

women who drank less during pregnancy. 

Some effects of alcohol in pregnancy are 

small size/low birth weight, brain damage, 

mental retardation, behavioral problems, 

facial abnormalities, and heart, lung and 

kidney defects. 

A great deal of neurological development 

occurs after birth, and if child care, nutrition, and environment are adequate, it is 

likely that FAS/FAE children can make considerable progress. However, FAS/FAE related 

neurological damage is not curable. Early 

intervention, education, training and treatment from family members, community 

organizations and professionals can increase 

later success. But, adoptive parents need 

to be prepared, educated and supported 

through services before, during, and after 

the placement in order to overcome the 

special challenges that these children will 

face as they age. 

challenges of 

Adopting a child 

with Developmental 

Disabilities

 Those who have adopted children with 

disabilities feel that they receive more from 

the experience than they give. Adoptive 

parents need a special awareness to understand that parenting children with developmental disabilities can require a different 

kind of lifetime commitment in terms of the 

amount of continued care and support the 

child may need as an adult. The challenges 

don’t go away, rather they shift at different 

developmental ages and stages. Nonetheless, 

it takes a person with specific abilities and 

an optimistic attitude to help a child with 

developmental disabilities reach his or her 

full potential. 

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Adopting Children With Developmental Disabilities	¬ www.childwelfare.gov 

Joan and Bernard McNamara, authors of The 

Special Child Handbook, are the parents of six 

children, five of whom have special needs. 

Of these, four are adopted. The McNamaras 

suggest that some combination of the following qualities is helpful in parenting a 

child with developmental disabilities: 

• You like children and enjoy the challenge 

of raising a family. If you are not a parent 

already, you may have had other kinds of 

exposure to children, through volunteer 

work, teaching, or your own extended 

family, that have given you an insight 

into the daily realities of parenting. 

• You are a flexible person. You usually deal 

with frustration with patience and are 

open to changes in your expectations and 

lifestyle. 

• You are able to view people for what they 

can accomplish, not what they cannot, 

and you value them according to their 

own potentials. 

• You have had contact with people who 

have disabilities. 

The task of finding resources in terms of services and support is added to the challenge 

of finding out who you are and who the 

child is. Adoptive parent groups assist with 

all of these issues. They provide a unique 

setting to help parents share, understand, 

and manage the complexities they face. The 

groups offer educational, social, and support 

services, sometimes including respite 

care. They can refer to other information 

systems in the community, such as specialized organizations like the National Down 

Syndrome Congress or the United Cerebral 

Palsy Association. In addition, more adoption agencies and adoptive parent groups 

are providing post-adoption and counseling 

services. 

Financial assistance is available to most 

families who adopt children who have 

disabilities and can include monthly cash 

payments, medical costs, some specialized 

services, and adoption-related expenses. 

This assistance is available through State 

Departments of Public Welfare and is usually 

arranged before the adoption occurs. More 

information is available in the Child Welfare 

Information Gateway publication “Adoption 

Assistance for Children Adopted from 

Foster Care: A Factsheet for Families” or 

via North American Council on Adoptable 

Children’s NAATRIN program. The National 

Adoption Assistance Training, Resource, 

and Information Network (NAATRIN) offers 

support and information without charge to 

adoptive and foster parents, adoption professionals, and other child advocates who 

have questions about Title IV-E Adoption 

Assistance. NAATRIN can be contacted by 

telephone toll-free at (800) 470-5, email 

to adoption.assistance@nacac.org, or online 

at www.nacac.org/adoptionsubsidy.html. 

What Parents Say 

The McNamaras sum up this special type of 

parenting when they say, “...most parents 

who have adopted children with special 

needs agree that the positive growth of their 

whole family through adoption has been a 

cherished opportunity and one they would 

enthusiastically repeat. Adopting children 

with special needs means opening yourself 

to a loving challenge and to the gifts they 

bring.” 

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Adopting Children With Developmental Disabilities www.childwelfare.gov 

Sources of Support and information 

A complete resource listing of national organizations and information and referral sources 

entitled “Children with Disabilities/Special Needs” is available from Child Welfare Information 

Gateway. 

Bibliography 

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Brown, E. Recruiting Adoptive Parents for Children with Developmental Disabilities. (1988). Child 

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Brown, S. L. (1989). Profile: Permanency Planning Assessment for Children with Developmental 

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This material may be freely reproduced and distributed. However, when doing so, please credit 

Child Welfare Information Gateway. Available online at www.childwelfare.gov/pubs/f_devdis.cfm. 9