Utah Family Voices

Utah Family Voices

Information Sheets

Utah Family Voices staff have created a series of information sheets to help you!

Disability and Air Travel
PDF Version
Flying with a disability need not create any hindrance to your journey.  Many automatically assume that just because a person has a disability it will inevitably restrict their opportunity to travel around the world.  This need not be the case.  Flying for an individual with a disability may be slightly more complicated than for a flier without a disability.  nevertheless, the majority of airlines are now equipped to cater fliers with disabilities.

Alternative Therapies
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More and more families of children with special needs are turning to complementary, integrative or alternative medicine – treatment options that are used in addition to (or in place of) traditional western medicine.  Generally complementary, alternative and/or integrative medicine (CAM) can be defined as “a broad set of health care practices that are not easily integrated into the dominant health care model, because they pose significant challenges to societal beliefs and practices”.  Examples of CAM can include massage, herbal medicines and acupuncture, nutritional supplements, chiropractic, electromagnetic and hyperbaric oxygen.

Caregivers
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Taking care of someone that requires long term and critical care can be very difficult for the individual providing the care.  It has been documented that there is an increase in alcohol, drugs and smoking in caregivers.  Also, there has been a study that showed that 10 percent more people were divorced when they had a child or parent that they had to care for.  The positive news is that there are things that can be done to avoid negative effects.

Depression and Anxiety
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In the U.S. today, one in ten children suffer from a mental disorder severe enough to cause some level of impairment.  All children feel sad, blue, irritable or nervous on occasion.  However, when those emotions continue for an extended period or interfere with activities of daily living, the medical home should screen and consider interventions to improve the child’s functioning and success in life.  Increasingly, the responsibility for providing mental health care falls to primary care providers.  Because normal behaviors vary from one childhood stage to another, it can be difficult to tell whether a child is just going through a temporary “phase” or is suffering from depression.

EPSDT (Early and Periodic Screening, Diagnosis and Treatment)
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Medicaid’s child health component, known as Early and Periodic Screening, Diagnosis and Treatment (EPSDT) program has been shaped to fit the standards of pediatric care and to meet the special physical, emotional and developmental needs of low-income children.  Federal law requires that Medicaid cover a very comprehensive set of benefits and services for children, which are different from adult benefits.  Since one in three U.S. children under age six is eligible for Medicaid, EPSDT offers a very important way to ensure that young children receive appropriate health, mental health and developmental services.

Genetic Counseling
PDF Version
Genetic counselors are health professionals with specialized graduate degrees and experience in the areas of medical genetics and counseling.  Genetic counselors provide information and support to families who have members with birth defects or genetic disorders and to families who may be at risk for a variety of inherited conditions.  They identify families at risk, investigate the problem present in the family, interpret information about the disorder, analyze inheritance patterns and risks of recurrence, review available options with the family, provide supportive counseling to families, serve as patient advocates and refer individuals and families to community or state support services.

Medicaid D Program
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In the state of Utah, applying for SSI (Social Security Income) is not the same as applying for Medicaid.  Disability Medicaid pays for medical bills, while SSI provides some financial support.  Medicaid is run by the state whereas SSI is run by the federal government.  It is encouraged that people apply for both.  Family Medicaid is based on poverty levels.  With Disability Medicaid, the factors change on how income and assets are counted.  Medicaid gives more deductions from income than SSI does.

Menstrual Management
PDF Version
When a child has a disability, it is important for their parents or primary caregiver to talk to the primary care physician about puberty well before they start to go into it.  Someday their daughter will go into menses.  There are options to make the process much easier.  The parent will want to be aware of the early signs of puberty.  Although it might seem a relief to some that their child has not started menses at an average age, it is important to talk to the physician to make sure they don’t need to be treated for something like hypothyroidism.

Nutrition
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Children and youth with special health care needs are at risk for nutrition-related health problems.  This population is defined as “those [children/youth] who have or at increased risk for a chronic physical, developmental, behavioral or emotional condition who require health and related services of a type or amount beyond that required by children generally”.  Approximately 7 – 18% of children and youth ages birth to 18 years in the United States have one of these conditions that cause limitations in activities and/or that require special care.

Obesity
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Childhood obesity has become an epidemic in the United States over the last generation.  More children are overweight or obese today than ever before and the numbers continue to grow.  Obesity is defined as 20% over the recommended weight for height or greater than the 85th percentile for Body Mass Index (BMI).  Childhood obesity is mainly caused by a lack of physical activity.  Today’s youth lead a very sedentary lifestyle, with an average of 17 hours a week of television watching, not including video games and computer time.  Children with disabilities are at an even greater risk for obesity because of this sedentary lifestyle.  Many parents believe that because of their disability, their children cannot be physically active, which is not the truth.  This lack of physical activity may not only lead to obesity, but to many other numerous health problems as well.

Oral Health Care
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Developmental disabilities such as autism, cerebral palsy, Down syndrome and intellectual disabilities that are present during early childhood or adolescence can last a lifetime.  They affect the mind, the body and the skills people use in everyday life: thinking, talking and self-care.  People with disabilities often need extra help to achieve and maintain good health.  Oral health is no exception.

Puberty
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Puberty in U.S. children typically has an onset between 8.5 and 13 years of age in females and between 9 and 14 years of age in males.  Among children with disabilities, these ages vary, depending on the individual and their disability.  Puberty can challenge children with disabilities, who may be socially immature, by affecting an already altered body image and self-esteem, increasing the complexity of self-care and hygiene activities and heightening the risk of sexual victimization.

School Health Care Plans
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The number of students with special health care needs in the education setting is increasing due to advances in medicine and increased access to public education as authorized by federal and state laws.  Furthermore, some chronic conditions have potential for developing into a medical emergency and require the development of an Emergency Care Plan (ECP).  The ECP is a component of an Individualized Healthcare Plan (IHP), not a substitute.  Standardized IHPs are available for the most frequent chronic health problems that occur in school-age children.  IHPs are recommended are students whose health needs affect their daily functioning, that is, students who: are medically fragile with multiple needs, require lengthy health care or multiple health care contacts with the nurse or unlicensed assistive personnel during the school day, have health needs that are addressed on a daily basis and/or have health needs addressed as part of their IEP or 504 plan.