How to Treat People with Down Syndrome ?

Introduction:
The glib answer to the question "how do I treat people with Down syndrome?"
is: "The same as you treat everybody else". There is nothing really unusual
about people with Down syndrome or their medical problems and managing them
is not particularly difficult. The reality is, however, that general
practitioners will be called upon to provide medical care to people who have
Down syndrome through their lives and unfamiliarity with the syndrome may
compromise the quality of that care. This article, published in Australia
during Down Syndrome Week in 1993, aims to assist general practitioners in
the provision of quality medical care to people with Down syndrome and their
families from diagnosis to old age.

Background:
There is evidence in ancient art of people with trisomy 21 being part of the
human race for thousands of years but it was not until 1866 that Dr John
Langdon Down first remarked on the facial similarities of a group of his
mentally retarded patients. Unfortunately, he used racial descriptors such
as "mongol" to describe their appearance which led to a century of
inaccurate and misleading terminology. People who have Down syndrome and
their advocates are understandably sensitive about the words used to
describe this chromosomal condition. With the identification of the
chromosomal basis of Down syndrome in 1959, a gradual process of acceptance
of trisomy 21 as being a variation of normal has done a lot to remove some
of the handicap and end uninformed debates over the "humanity" of people
with Down syndrome.

Apart from using the term "mongol", another way to get into a heated
discussion is to refer to a person as "suffering from Down syndrome". This
is a nonsensical statement as the syndrome in itself is not painful or
distressing. The phrase "a person with Down syndrome" is accurate,
non-pejorative and reminds us that the patient is, indeed, a person first.

Down syndrome is the commonest identifiable cause of intellectual
disability, accounting for almost one third of cases. It occurs equally in
all races with an overall incidence of approximately 1 in 800 births. This
is much lower than the actual conception rate due to a high incidence of
spontaneous and surgical abortion. The increase in incidence with advancing
maternal age is well-known but what is not commonly realised is that most
children with Down syndrome are born to mothers who are less than 30. This
is due to a greater number of pregnancies in this age group compared to the
older group.

Ninety five percent of cases of Down syndrome are caused by trisomy 21, with
unbalanced translocations of chromosome 21 and mosaicism accounting for the
remainder. The extra chromosome is maternal in origin in at least 90% of
cases.

Prenatal screening:
The medical profession has been criticised for allowing technical advances
to outstrip our ability to deal with the ethical issues which they raise. It
is heartening, therefore, to see paternalism being replaced by a conscious
effort on the part of doctors to act as expert informers who allow parents
to make their own decisions based on accurate facts. While the technical
procedures require a high level of skill to be performed well, an even
higher level of skill is required to handle the results appropriately.

Amniocentesis:
Amniocentesis of "high-risk" pregnancies at 16 weeks remains the commonest
method of detecting those which are affected by trisomy 21. Such pregnancies
are selected on the basis of maternal age being greater than 35 years or a
previously affected pregnancy. The risk of having a second pregnancy with
Down syndrome is 1% unless a translocation was the cause in which case the
risk may be much higher. The procedure is not without its problems, however,
which include an accidental miscarriage rate of 0.5 - 1% and the potential
need to perform a mid-trimester abortion if that is the option selected by
the parents.

Despite being extremely sensitive this test will still miss the majority of
trisomy 21 pregnancies due to the restriction of its use to the older age
group, whereas most babies with Down syndrome are born to mothers less than
30 years old. The use of mass maternal serum screening (ideally measuring
alphafetoprotein, hCG and oestriol) at 16 weeks gestation is now routine in
some states and allows the detection of 60% of trisomy 21 affected
pregnancies with a false positive rate of 5%. Women who are detected in this
way (1-2% of the tested population) are then offered amniocentesis, allowing
a reduction in the number of unnecessary invasive procedures while
maintaining high rates of detection. As with all screening tests, however,
adequate pre-test discussions must take place to ensure parental
understanding and consent. The technical aspects are far less challenging
than the counselling issues.

Chorionic Villus Sampling:
This procedure involves the transvaginal biopsy of the developing placenta
at 10 to 12 weeks gestation. It has the advantage of earlier detection of
chromosomal abnormalities than is possible with amniocentesis but it is
associated with a higher rate of post-procedure miscarriage (2-5% depending
on the operator). Concerns have been raised over limb and jaw defects in
foetuses which have undergone the procedure but hard data is lacking.

Ultrasound:
Multiple foetal characteristics have been studied as possible indicators of
trisomy 21. These include posterior fossa size, nuchal skinfold thickness,
hand posture and bone lengths. Although this technology offers promise for
the future, it is not reliable enough for use as a screening test at
present. The same can be said of detecting and karyotyping fetal cells in
maternal circulation, although this technology is imminent.

WHEN DOWN SYNDROME IS DIAGNOSED:
Giving the diagnosis of Down syndrome to a couple, either antenatally or in
the immediate postpartum period, requires all of the doctor's communication
and counselling skills. It is the general practitioner to whom most parents
would prefer to turn for this information.

Giving the prenatal diagnosis:
Although parents should have been prepared for the diagnosis of Down
syndrome before the test took place, even the best pre-test counselling does
little to offset the shock of an unexpected diagnosis. Initial shock and
denial can be anticipated as part of a sudden shift in parental
expectations. Most parents experience a need for concise, accurate and non-judgemental
information on which to base their decision. Contact with the Down Syndrome
Association might be helpful if the parents are agreeable.

One of the great challenges for doctors when trisomy 21 is detected
prenatally is to give a balanced and complete explanation of the options
available to the parents so that they can come to an informed decision
whether to continue with the pregnancy or not. This includes giving accurate
information about Down syndrome and the range of expectations they could
have for the child, while not trying to be impossibly predictive.

If termination of pregnancy is selected after adequate discussion, the full
impact of that procedure must be explained. Careful follow up should be
arranged to ensure that an appropriate grieving process for the loss of the
pregnancy takes place. Insensitive statements such as "Forget this one and
start again" are cruel and ignorant.

The detection of trisomy 21 prenatally does not always result in the
termination of that pregnancy. During pre-test discussions with the parents,
when information is given about the conditions being sought, it might become
apparent that the couple would not choose to abort an affected pregnancy but
just want to know of any defects so that they can be prepared for the baby's
arrival. It is vital that all couples be adequately prepared for any
screening tests so that they understand what the test is for, what its
dangers are and what options are available should the test be positive for
the condition being sought.

Giving the postnatal diagnosis:
The way in which the diagnosis of Down syndrome is communicated is another
area where the consumers of our medical services have expressed
dissatisfaction.

The firm diagnosis of Down syndrome on phenotypic grounds is usually
possible immediately after delivery. The doctor who tries to avoid making
the diagnosis for a few days until the karyotype is known will only be
pre-empted by a grandparent. It is essential to inform the parents, at least
of your suspicions, as soon as possible after delivery.

The Delivery Suite diagnosis of Down syndrome should follow this plan:
As soon as the baby is delivered congratulate the parents on the birth of their child.

Advise them whether the baby is healthy or not and explain any immediate
resuscitative procedures you are performing.

As soon as third stage is complete and the baby is stabilised, ensure that
you can have some time alone with both parents and the baby. Many parents
will already have sensed an apprehensive atmosphere in these few minutes. A
midwife who has been involved with the delivery may be an invaluable
support.

State your clinical diagnosis and, if necessary, your degree of certainty.
An opening statement could be: "She looks very healthy but I have some news
for you that you might not have been expecting. Your baby has Down
syndrome." You should be touching the baby as you say this and using her
name, indicating your acceptance of the child. No new parent wants their
doctor to treat their baby with repugnance.

After dealing with any immediate denial statements from the parents, it is
necessary to evaluate their understanding of the diagnosis ("What do you
understand by the term Down syndrome?"). It may become evident that they
have little knowledge about the condition or they are weighed down with
myths and misunderstandings. These should be corrected carefully.

It is impractical to fully educate the parents of a baby with Down syndrome
immediately after delivery. Enough information should be given so as to
answer their immediate questions and support them until later in the day
when more detailed discussions can take place. Immediate information should
include a synopsis of the aetiology of the syndrome, a defusing of either
parent "blaming" the other, and a description of investigations and
procedures which are necessary to fully evaluate the child's health.

A complete discussion of the diagnosis should take place once the parents
are at least partially recovered from the immediate stress of delivery,
usually within twenty four hours. By this time there will be a barrage of
questions which will need to be answered accurately and adequately. Every
effort should be made to have both parents at this meeting. Again the child
should be present as the focus of the discussions and should be held by the
parents. It is still too early to overload the parents with every minute
fact so there is a need to be sensitive to their particular rate of uptake
of these new and complex concepts.

Don't try to be to predictive. It is nonsense to try to foresee the future
for any child with accuracy. Perpetuating myths such as "at least he'll
always be loving and enjoy music" is inexcusable. A "broad brush" picture
should be painted which recognises every child's capacity to develop
individually.

Family and friends can be a source of great support but they may also need
information and education. Each state has a Down Syndrome Association which
offers in-hospital and ongoing support to parents of babies with Down
syndrome by people who have been in that situation themselves. Contact
numbers are listed at the end of this article.

It may be helpful for relations to bring in photos of the parents as
neonates. This allows the parents to compare the baby's facial
characteristics with their own and see that it is their baby, not a "Down's
baby".

Most doctors understand the parents' need to have time alone but also to
feel confident in approaching the doctor at any time for more information.
An open-door policy is essential.

When a case of Down syndrome is delivered, a child is born. This simple fact
is so often overlooked in the storm of emotional upheaval that the new
mother and father are rarely congratulated on becoming parents. One
Melbourne mother was even sent an "In Sympathy" card the day after she
delivered a healthy baby who had Down syndrome . Less than thirty years ago
some Australian doctors used to advise their patients to place their Down
syndrome babies in institutions and tell their relations they had been
stillborn. Although this sort of approach no longer exists, very
occasionally the parents of a newborn with Down syndrome will decide that,
for whatever reason, they are unable to accept the child. In this situation
the options include foster care or adoption and it is obviously not a
decision to be taken lightly. The doctor's role is again that of an informed
counsellor, not a judge.

The process of coming to terms with having given birth to a child with Down
syndrome has been likened to the well-known grief reaction which occurs
after the death of a child. Stages such as denial, anger, acceptance et
cetera are recognisable and the parents are said to be grieving for the loss
of their expected "perfect" child. While this view has some small merit, it
fails to address the long term and varying nature of the readjustment
process in the case of the family of a child with Down syndrome. After all,
the child has not died.

MEDICAL CARE OF PEOPLE WITH DOWN SYNDROME:
Although Down syndrome is not a medical illness, there are a number of
pathological processes which are more common in people who have the
condition. These associations will necessarily bring people with Down
syndrome into frequent, and at times intensive, contact with doctors.

Neonatal period:
Immediately after delivery the child should be fully examined to confirm the
diagnosis and to identify any immediate medical problems. Paediatric
consultation is appropriate in most situations.

Cardiac: Congenital heart disease, usually in the form of endocardial
cushion defects, affects 40% of babies and should be screened for by
echocardiography soon after birth as it may well be difficult to detect.
Septal defects and Fallot's tetralogy also occur. The discovery of severe
congenital malformations often raises the issue of how interventive to be.
It must be emphasised that exactly the same medical and surgical treatment
should be instituted for a child with Down syndrome as for a child without a
chromosomal disorder.

Severe congenital heart disease remains a major killer of children with Down
syndrome, despite advances in surgical treatments. In the absence of a
congenital heart defect, however, the majority of children can expect to
live into their sixth decade.

Gastrointestinal: The commonest congenital abnormality of the
gastrointestinal tract associated with Down syndrome is duodenal atresia,
although pyloric stenosis, Hirschsprung's disease and tracheo-oesophageal
fistulae have all been reported. Again, surgical intervention should be
evaluated without reference to the chromosomal disorder. The total incidence
of GIT malformations is approximately 12%.

Vision: Three percent of newborns with Down syndrome will have dense
congenital cataracts which should be removed early. Glaucoma is also more
common.

Feeding: Hypotonia is a constant feature of neonates with Down syndrome.
This floppiness can interfere with breastfeeding and an experienced
lactation consultant may need to be involved to ensure that the process is
successful. Feeding tends to take longer and there may be attachment
problems due to a protuberant tongue. Some babies experience difficulty
maintaining temperature and may need extra swaddling during feeding.
Constipation is more common due to hypotonic gut musculature.

Congenital Hypothyroidism: This condition is slightly more prevalent in
babies with Down syndrome. It should be detected by the routine heelprick
screen performed on all neonates.

Congenital dislocation of the hips: Joint laxity and hypotonia can combine
to increase the incidence of hip dislocation, although true congenital
dislocation is quite rare. Extra care should be taken during the usual
neonatal examination.

Infancy:
Once any urgent medical conditions have been addressed and feeding has been
successfully established, the parents will take their new baby home. If the
general practitioner has not been involved during the in-patient stay, early
contact is important to allow an assessment of the child's baseline medical
condition. This "well child check" means that the doctor need not be
confronted for the first time by an unfamiliar and obviously sick child
several months later.

Medical care in the first year of life will include the continued management
of any problems identified in the neonatal period as well as surveillance
for acquired problems such as hearing or visual impairments. Early and
regular contact with appropriately-experienced consultants should begin in
the first year.

Seizure disorders are more common in children with Down syndrome
(approximately 10%) and can occur from an early age. They are usually tonic
clonic in nature.

People with Down syndrome have reduced cell-mediated immunity and so babies
in particular are likely to suffer more respiratory infections. Upper airway
obstruction is also more common due to hypertrophy of tonsils and adenoids.
This alteration in immunity has also been implicated in the observed
increase in incidence of leukaemia in people with Down syndrome, although
the link is not clear.

In practical terms the decrease in immunity has little impact. The normal
childhood immunisation program should be commenced at the usual time.

The philosophy of "early intervention" is now well accepted as having
benefits for the child and family. This refers to home-based or centre-based
treatment of a disabled child by a variety of health professionals such as
occupational therapists, physiotherapists and speech therapists from a very
early age. The parents are also involved as therapists. These recognised,
government-sponsored programs tend to be preferable to the so-called
"fringe" therapists who can be exhausting of parental resources without
producing many results.

Childhood:
As the child grows through the preschool years it will become evident that
development is globally delayed. Physical milestones will be delayed due to
hypotonia and joint laxity, speech is likely to be difficult and
socialisation may be delayed. Psychometric evaluation shows that most
children with Down syndrome have intellectual functioning in the moderately
disabled range but the range is enormous. At this time it is useful to
assist the parents in recognising that a different set of milestones is
relevant for this child, and that comparing its progress to that of siblings
is not much help. Comparing notes with other parents of children with Down
syndrome is helpful but it must be remembered that each child will follow
their own path. It is important not to make too many predictions as to how
far and how fast the child will develop but the mood should be one of
optimism and reasonable expectations, as for all children.

The general practitioner's lifelong relationship with the child should be
developing well at this point. Familiarity with what is normal for that
child will allow the early recognition of any health problems, as will an
awareness of which medical conditions are more common. Beyond that, however,
the astute GP will remember that the child with Down syndrome is susceptible
to the same range of childhood problems as any other and that not all
symptoms will be due to the syndrome.

The GP's approach to a child with Down syndrome should be the same as to any
other child: friendly, non-threatening and interactive. The parents are
usually invaluable sources of information about the child and, after several
years of hard work, will have become staunch advocates and
"bureaucracy-busters". Their concerns should be treated with due
consideration.

Having been involved in early intervention and preschool programs, most
children with Down syndrome are well-equipped for entry to mainstream
schooling at the usual time. There remains a lot of debate over the relative
merits of mainstreaming versus special schooling which is outside the scope
of this article. The doctor's role is generally to support the parents in
their decision making and to address any medical issues which may arise when
selecting a school.

Congenital Heart Disease: Severe malformations which cannot be definitively
treated remain a major cause of morbidity and mortality throughout
childhood. Close liaison with a paediatric cardiologist should be
maintained.

Sensory deficits: Significant hearing impairments occur in the majority of
children with Down syndrome. Annual audiometry and specialist consultation
is recommended.

Visual impairment due to refractive errors or strabismus is also common and
should be checked annually. Cataracts often develop but are usually outside
the visual axis.

Hypothyroidism: With a lifetime incidence of anything up to 30%,
hypothyroidism must be screened for on a regular basis. Although most cases
develop in teenage years, biannual biochemical screening of younger children
is recommended. If any symptoms of thyroid disease are detected, early
investigation and treatment are essential.

Atlantoaxial instability: There has been a lot of controversy as to the
correct approach to this problem. Up to 15% of children with Down syndrome
will have radiological evidence of instability of the atlantoaxial joint but
in only a handful of cases will this instability result in an impingement on
the spinal cord with resultant neurological signs. The controversy arises
over whether to screen radiologically all people with Down syndrome and if
so, when. If instability is detected, is it fair to limit a person's
sporting and recreational pursuits in an attempt to prevent the rare
complication of damage to the spinal cord? Subtle neurological signs are
sometimes difficult to detect in people with Down syndrome and the surgery
involved in stabilising the joint is major.

The current consensus is marginally in favour of radiological screening
before school entry, mainly to reassure the parents of the large majority of
children who will be found to have stable AA joints. If instability or
anatomical abnormalities are detected, careful counselling should ensure
that activities are modified appropriately without restricting the child
unnecessarily. Neurological surveillance is essential. Some authorities
recommend a second set of screening radiographs before entry to high school
for all children with Down syndrome although there is little evidence to
support the concept of development of instability.

Physical growth: Physical development is invariably delayed in children with
Down syndrome and modified percentile charts are available for accurate
monitoring (). A tendency towards obesity requires special attention to
healthy diet and exercise habits in this group.
Dental care: The teeth of children with Down syndrome tend to be small,
irregularly spaced and misshapen. Early and frequent dental care is required
to ensure adequate dentition for adult life.

Adolescence
Having Down syndrome does not protect against the hormonal maelstrom which
usually accompanies adolescence. All the usual trials and torments of this
potentially difficult phase of development have to be negotiated. This
includes the adolescent trying to establish his or her own identity, find
some private space and pursue their own interests.

People with disabilities are sexual beings and those with Down syndrome are
no exception. It is a grave injustice to hold a stereotype of people with
Down syndrome as being "happy eternal children", as any parent will agree.
Teenagers with Down syndrome are subject to the same tempers, desires and
emotions as anyone else, although they are often more frustrated in their
expression.

Some specific medical conditions need attention:
Menstruation & sexuality: Menarche is usually only slightly delayed in girls
with Down syndrome. Menstruation usually settles into a regular pattern and,
although many cycles will be anovulatory, fertility should be presumed.
There are approximately thirty cases in the world literature of women with
Down syndrome becoming pregnant.

There is a long history of women with Down syndrome having their
menstruation and fertility controlled through the use of medications such as
progesterone or surgical intervention. Little attention was paid to the
woman's needs and even less to providing appropriate education on menstrual
hygiene, relationships and contraception. A hysterectomy does not protect
against sexual abuse, particularly when women with Down's syndrome are seen
by many as compliant and helpless. More enlightened thinking has allowed
these women to successfully manage their own menses and to make decisions
about contraception, based on appropriate information from expert
counsellors.

It is hard to justify involuntary menstrual suppression or sterilisation
unless there are major medical indications. A recent High Court decision has
given the Family Court responsibility for consenting to sterilising
procedures on children. Most states have legislation giving intellectually
disabled adults the same protection through Guardianship Boards.

Adolescent males with Down syndrome usually experience the same sexual
drives and frustrations as their peers. The genitals are usually small and
underdeveloped although this is by no means invariable. Some men have
difficulty attaining a full erection and ejaculation is not always possible.
Although the semen of males with Down syndrome shows decreased sperm numbers
and motility with increased abnormal shapes, there is at least one recorded
case of a child being fathered by a man with Down syndrome.

Education about appropriate sexuality is essential. One of the great
obstacles to developing healthy sexual expression for people with Down
syndrome is the lack of information which other teenagers have access to
through a variety of community sources. Family Planning clinics and women's
health resource centres can often be of assistance to families and general
practitioners in this area.

Hypothyroidism: As most cases of hypothyroidism in people with Down syndrome
develop during the teen years, surveillance should be increased to yearly
thyroid function tests along with an increasing index of suspicion as to
whether this condition could be behind unusual clinical presentations.

Skin: The skin of children with Down syndrome tends to be dry and
susceptible to eczema. During adolescence, folliculitis and boils become
more common. Alopecia areata is a common manifestation of the disordered
autoimmunity which may accompany Down syndrome.

Adulthood
Changes in the approach to people with Down syndrome in the latter part of
this century has resulted in a threefold increase in their life expectancy.
Better and more active medical care coupled with community living have been
largely responsible. It is only in the last few decades that people with
Down syndrome could reasonably expect to reach adulthood. If the first five
years of life (when most cardiac deaths occur) are survived a person with
Down syndrome has an 80% chance of reaching the third decade and a 60%
chance of living beyond fifty. The average age of death for a person with
Down syndrome is in the mid-fifties. All this means that general
practitioners need to employ the same preventive health skills as they do
for the rest of the community so that people with Down syndrome can be
healthy into old age.

People with Down syndrome still complain about the way they are perceived by
some doctors. A man of twenty five should not be called a "boy". He has
usually moved out of the family home and is working in an adult centre. He
is probably able to answer questions about his health and should be given
the opportunity to do so. He is an adult and should be treated as such.
Medical procedures should be explained to him in appropriate language (see
figure 3) and consent should be gained in the usual way.

If there is any likely controversy over a medical treatment or procedure for
an adult with Down syndrome, a guardian may need to be appointed to make
decisions on behalf of that person. This only applies if the person is not
competent to give informed consent and it is one of the few areas of the law
where common sense has a large role to play. Usually a parent or concerned
friend can be seen to be clearly capable of making decisions which are in
the best interests of the disabled person. Uncertainties about the need for
a guardian can usually be cleared up by a telephone call to the Guardianship
Board or Attorney General's Department in each state.

Preventive care: The usual range of preventive health activities should be
offered to adults with Down syndrome. The usual protocols apply for cervical
cytology, breast screening and cardiovascular risk factor monitoring. Diet
and exercise advice should be realistic, comprehensive and adapted for the
person's living and employment situation where necessary.

Hypothyroidism: Throughout the adult years vigilance for thyroid dysfunction
should be maintained with annual thyroid function tests. Sensory deficits:
On going contact with eye and ear specialists is advisable during adult life
due to a high prevalence of acquired problems such as cataracts, keratoconus
and sensorineural hearing loss.

Behavioural problems: One of the most difficult challenges confronting a GP
in treating a person with an intellectual disability is the assessment and
management of difficult behaviours. Our predecessors seem to have relied
heavily on the use of major tranquillisers as a way of quelling angry
outbursts or destructive behaviour but this approach does nothing to
identify the root cause of the problem. People with disabilities rarely
behave in a destructive or violent way unless there is a reason. It may be
something intrinsic to the person, such as depression or a tooth ache. It
may be due to a change in that person's life situation, such as a change of
residence or employment. Or it may be due to interpersonal conflict. The
doctor's role is to seek the underlying cause of the problem through a full
assessment rather than just to suppress the symptoms.

Psychiatric disorders: Psychiatric illnesses occur in people with Down
syndrome with much the same frequency as in the rest of the population. This
is a difficult area for psychiatrists, however, and there are few in
Australia who have risen to the challenge of providing comprehensive mental
health services to people with intellectual disabilities.

Dementia: Much recent attention has been focussed on the association between
Down syndrome and Alzheimer's disease. There appears to be a gene-dose
effect where having an extra chromosome 21 gives an individual a higher
chance of developing the neuropathological changes of Alzheimer's disease,
which are coded for on that chromosome. The association is so strong that
some authorities are advocating the inclusion of Alzheimer's disease as one
of the invariable features of the syndrome, although it is always a
diagnosis of exclusion after other, reversible causes of dementia have been
excluded. Late onset epilepsy is often seen in association with Alzheimer‚s
disease in this group.

From a practical point of view it is helpful to be aware of this
association. Due to the increased life expectancy of people with Down
syndrome, most of our patients can be expected to show signs of dementia as
they age. The recognition of declining intellectual functioning and loss of
some social skills may assist the GP in suggesting appropriate strategies to
help the patient and family. These may include a move to more appropriate
accommodation, involvement in generic geriatric services and contact with
specialised support agencies.

Summary:
People with Down syndrome are part of our community and as such are part of
the GP's patient population. While there are some medical conditions which
are more common in people with an extra chromosome 21, there is nothing
which is unique to this group or which is totally outside the scope of
general practitioner involvement. The key to good quality care is to be
familiar with the syndrome but, more importantly, to know the person who has
the syndrome.

The advocacy efforts of people with Down syndrome and their families have
resulted in huge improvements in life quality and expectancy. The medical
profession is attempting to match these developments by becoming more
sophisticated in its approach to ethical issues, more energetic in its
provision of care and more cooperative in its interactions with people who
have Down syndrome and their families.