Families with Special Needs: Caregiving Tips
Whether your family member with special needs is a child or an adult, integrating personal and caregiving needs into everyday life can be challenging. Below are general caregiving tips and links to information on specific health topics to help you and those you care for stay safe and healthy.
Caregiving Tips
Be informed.
- Take the time to learn about your family member’s condition and special need requirements from a variety of reliable sources, including health care providers and other health professionals that work with families with special needs.
- Know the needs of you and your family, and work together to make good choices about housing, insurance, schools, health services, care, and more. If you have employee benefits and insurance policies, determine what is covered for your unique circumstances. If you don’t have them, determine what local, state, and other benefits are available.
- Notice how others care for the person with special needs. Be aware of signs of mental or physical abuse.
Get support.
- Family members and friends can provide support in a variety of ways and oftentimes want to help. Determine if there are big or small things they can do to assist you and your family.
- Join a local or online support group. A support group can give you the chance to share information and connect with people who are going through similar experiences. A support group may help combat the isolation and fear you may experience as a caregiver.
- Don’t limit your involvement to support groups and associations that focus on a particular need or disability. There are also local and national groups that provide services, recreation, and information for families with special needs.
- Find out what services are available in your area through government agencies, public and private community organizations, and schools.
Be an advocate.
- Be an advocate for your family member with special needs. Caregivers who are effective advocates may be more successful at getting better service.
- Ask questions. For example, if your family member with special needs uses a wheelchair and you want to plan a beach vacation, find out if the beaches are accessible via a car, ramp, portable walkway mat, or other equipment.
- Inform other caregivers of any special conditions or circumstances. For example, if your family member with special needs has a latex allergy, remind dental or medical staff each time you visit them.
- Document the medical history of your family member with special needs, and keep this information current.
- Make sure your employer understands your circumstances and limitations. Discuss your ability to travel or to work weekends or evenings. Arrange for flexible scheduling when needed.
- Become familiar with the Americans with Disabilities Act, the Family Medical Leave Act, and other state and national provisions. Know how and when to apply them to your situation.
Be empowering.
- Focus on what you and your family member with special needs can do.
- Find appropriate milestones and celebrate them. For example, you may have to let go of “first words” or “first steps,” but there are events to remember and achievements to celebrate.
- If someone asks you questions about the family member with special needs, let him/her answer when possible. Doing so may help empower the individual to engage with others.
- When appropriate, teach your family member with special needs to be as independent and self-assured as possible. Always keep health and safety issues in mind.
Take care of yourself.
- Take care of yourself. Caring for a family member with special needs can wear out even the strongest caregiver. Stay healthy for yourself and those you care for.
- Work hard to maintain your personal interests, hobbies, and friendships. Don’t let caregiving consume your entire life. This is not healthy for you or those you care for. Balance is key.
- Allow yourself not to be the perfect caregiver. Set reasonable expectations to lower stress and make you a more effective caregiver.
- Delegate some caregiving tasks to other reliable people.
- Take a break. Short breaks, like an evening walk or relaxing bath, are essential. Long breaks are nurturing. Arrange a retreat with friends or get away with a significant other when appropriate.
Keep balance in the family.
- Pay attention to other family members. Family members with special needs require extra care and attention, but don’t let it be at the expense of the rest of the family. Take time for other family members, too.
Selected Health Topics
Asthma
Asthma is a disease that affects your lungs. It is the most common long-term
disease of children, but adults have asthma, too. Asthma causes repeated
episodes of wheezing, breathlessness, chest tightness, and nighttime
or early morning coughing. If you have asthma, you have it all the
time, but you will have asthma attacks only when something bothers
your lungs.
Birth Defects
Birth defects affect about one in every 33 babies born in the United
States each year. They are the leading cause of infant deaths, accounting
for more than 20% of all infant deaths. Babies born with birth defects
have a greater chance of illness and long-term disability than babies
without birth defects.
Blood Disorders
Blood disorders are complex conditions that can lead to poor blood clotting,
continuous bleeding, and chronic health problems.
Cancer
Some cancers have known hereditary factors that increase the risk for
cancer in family members. Family members should ask their health care
provider if they should be screened for cancer earlier or more often
than other people and if they should get genetic tests. Nearly 75%
of cancer survivors (people who
have been diagnosed with cancer and family members, friends, and caregivers
who are affected by the diagnosis) experience late or long-term effects
of cancer and its treatment.
Chronic Fatigue Syndrome
Chronic fatigue syndrome (CFS) is a debilitating and complex disorder
characterized by profound fatigue that is not improved by bed rest
and that may be worsened by physical or mental activity. Persons with
CFS most often function at a substantially lower level of activity
than they were capable of before the onset of illness.
Diethylstilbestrol (DES)
Diethylstilbestrol (DES) is a drug prescribed from 1938 to 1971 during
pregnancy to prevent miscarriage or premature deliveries. After more
than 30 years of research, researchers have confirmed health risks
associated with DES exposure. Assess whether you might have been exposed,
and learn more about the risks to women prescribed DES, DES daughters,
and DES sons.
Developmental Disabilities
Developmental disabilities are a diverse group of severe chronic conditions
that are due to mental and/or physical impairments. People with developmental
disabilities have problems with major life activities such as language,
mobility, learning, self-help, and independent living. Developmental
disabilities begin anytime during fetal development up to 22 years
of age and usually last throughout a person’s lifetime.
Diabetes and Children
Diabetes is one of the most common
chronic diseases in children and adolescents; about 151,000 people below
the age of 20 years have diabetes. When diabetes strikes during childhood,
it is routinely assumed to be type 1, or juvenile-onset diabetes. However,
in the last 2 decades, type 2 diabetes (formerly known as adult-onset
diabetes) has been reported among U.S. children and adolescents with
increasing frequency. Also, studies conducted in Europe showed an increase
in the frequency of type 1 diabetes, especially in young children. It
is unclear whether the frequency of type 1 diabetes is also increasing
among U.S. youth.
End of Life Issues
The end of life is associated with a substantial burden of suffering
among dying individuals. It also has health and financial consequences
that extend to family members and society. The data indicate that as
many as 50% of dying persons with cancer or other chronic illnesses
experience unrelieved symptoms during their final days. Furthermore,
recent studies demonstrate an increased likelihood of depressive symptoms
and mortality among caregivers of terminally ill patients. Because
most deaths occur within hospitals, end-of-life care has been recognized
as an important clinical issue needing improvement.
Epilepsy
You Are Not Alone is a toolkit for parents of teens who have
epilepsy. Parents know that the transition from childhood into adulthood
often includes emotional, psychological, and social challenges for any
teen. But a teen with epilepsy, especially when newly diagnosed, may
have additional anxiety and confusion due to epilepsy’s complexity
and unpredictability.
Flu (Influenza)
Children are at increased risk of getting severe illness from the flu,
including pneumonia, dehydration, worsening of long-term medical problems
(i.e. heart disease or asthma), encephalopathy, sinus problems, and
ear infections. Therefore, all children aged 6 months until their 5th
birthday should get a flu shot. Also, household contacts and out-of-home
caregivers of children less than 2 years old should get vaccinated
against the flu. This is particularly important for contacts of children
less than 6 months old, because children less than 6 months old cannot
be vaccinated themselves and cannot be given antiviral medications
to treat the flu.
HIV/AIDS
At the end of 2003, an estimated 1,039,000 to 1,185,000 persons in the
United States were living
with HIV/AIDS. Although infection with HIV is serious, people with
HIV and AIDS are living longer, healthier lives today, thanks to new
and effective treatments.
Infertility
Infertility is often defined as not being able to get pregnant after
trying for one year. Assisted reproductive technology (ART) has been
used in the United States since 1981 to help women become pregnant,
most commonly through the transfer of fertilized human eggs into a
woman’s uterus. However, deciding whether to undergo this expensive
and time-consuming treatment can be difficult.
Intimate Partner Violence
Most intimate partner violence (IPV) incidents are not reported to the
police. About 20% of IPV rapes or sexual assaults, 25% of physical
assaults, and 50% of stalkings directed toward women are reported.
Even fewer IPV incidents against men are reported. Thus, it is believed
that available data greatly underestimate the true magnitude of the
problem.
Lead Poisoning
Lead poisoning can affect nearly every system in the body. Because lead
poisoning often occurs with no obvious symptoms, it frequently goes
unrecognized. Lead poisoning can cause learning disabilities, behavioral
problems, and, at very high levels, seizures, coma, and even death.
Lead poisoning is entirely preventable. The key is stopping children
from coming into contact with lead and treating children who have been
poisoned by lead.
Mental Health
Mental health is important for overall health and well-being. Learn more
about disparities in mental
health disorders,
suicide, work-related
stress, mental health agencies and organizations, and more.
Pregnancy and Reproductive Health
Women should take healthy steps before and during
pregnancy to help prevent certain
birth defects, preterm birth, and more. This includes incorporating preconception care, taking folic acid, avoiding alcohol, and being smoke-free. In 2001, about 50% of pregnancies in the United States were unintended.
Smoking and Tobacco
Quitting smoking can lower your
risk for dying prematurely and getting lung cancer, heart disease, stroke,
respiratory problems, and more. Quitting smoking can also keep your family
healthier. Breathing in secondhand
smoke can cause health problems, including heart disease, lung cancer,
asthma attacks, and sudden infant death syndrome (SIDS). Smoking
during pregnancy is associated with increased risks for preterm delivery,
preterm premature rupture of membranes, abruption placentae, and placenta
previa. Smokefree.gov provides
help for people trying to quit, and the EPA has a smoke-free
homes initiative to motivate parents and caregivers to protect young
children from secondhand smoke exposure.
Sudden Infant Death Syndrome
(SIDS)
Each year in the United States, more than 4,500 infants die suddenly
of no obvious cause. Half of these sudden, unexplained infant deaths
are due to sudden infant death syndrome (SIDS), the leading cause of
death among infants aged 1–12 months. Always place infants on their
backs (face up) when they are resting, sleeping, or left alone.
Traumatic Brain Injury
A traumatic brain injury (TBI) is caused by a blow or jolt to the head
or a penetrating head injury that disrupts the normal function of the
brain. Not all blows or jolts to the head result in a TBI. The severity
of a TBI may range from “mild,” i.e., a brief change in
mental status or consciousness to “severe,” i.e., an extended
period of unconsciousness or amnesia after the injury.
Travel
Get travel information for special populations or situations, including
those related to disabilities, compromised immune systems, pregnancy,
breastfeeding, children, and adoptions.
Youth Violence
In 2003, 5,570 young people ages 10 to 24 were murdered- an average of
15 each day. Of these victims, 82% were killed with firearms. Although
high-profile school shootings have increased public concern for student
safety, school-associated violent deaths account for fewer than 1%
of homicides among school-aged children and youth.
This site contains documents in PDF format. You will need Adobe Acrobat Reader to access the file. If you do not have the Acrobat Reader, you may download a free copy from the Adobe Web site.
Page last modified: April 7, 2009
Page last reviewed: April 2, 2009