On May 1, 2003, former Governor Vilsack signed a bill that mandated newborn hearing screening in the state of Iowa. The bill assures that all newborns are screened for hearing and the results of the screen and any re-screens be submitted to the Iowa Department of Public Health for follow-up. The bill provides for the confidential sharing of information among agencies and persons involved with newborn and infant hearing screenings, follow-ups, and intervention services. The bill also allows parents the right to request a waiver if they do not want their child to be screened. For more information, visit the EHDI web site.
Childcare financial assistance is available to families with income at or below 125 percent of the federal poverty levels except for families with children with special needs or families who have expired Transitional Child Care benefits. For more information contact your local county office of the Iowa Department of Human Services.
CCR&R actively responds to community needs for affordable and accessible quality childcare by providing resources, education, and advocacy for children, parents, child caregivers, and employers.
CHSC is a public health program that provides services to children birth to 21 years of age with special health-care needs in partnerships with families, service providers and communities.
CHSC provides clinical services to children who have chronic physical and mental health problems such as, heart problems, diabetes, sickle cell disease, bone and joint diseases, and behavior problems. CHSC also helps families find and organize other local services that their children may need. CHSC works closely with other state and local organizations that help families.
The Childhood Lead Poisoning Prevention Program oversees blood lead testing of children, provides case management services when children are identified as lead-poisoned, and conducts education and outreach services regarding childhood lead poisoning.
Early childhood professionals in the area education agencies and local school districts provide a variety of services and resources to support families and young children, birth through five years of age. Services include health services, variety of therapies, social work services, assistive technology services, transportation services, and more. For more information, contact your local Area Education Agency.
Informing and care coordination services facilitate access to care for Medicaid eligible children. The program emphasizes comprehensive care and collaboration with other providers to assure medical, dental, vision and hearing care, immunizations, lab tests and health education.
EHS is a federally funded community-based program for low-income families with infants and toddlers and pregnant women promoting healthy prenatal outcomes for pregnant women, enhancing development of very young children, and promoting healthy family functioning.
The Governor's DD Council advocates for quality disability policies and services for Iowans. It also produces a newsletter, Inside Policy, as a resource for information on policy issues related to people with disabilities.
The Hawkeye Area Down Syndrome Association, Inc. is an organization that strives to provide new parent contact information and support through a variety of ways. They also work to increase community awareness of the capabilities and contributions of individuals with Down syndrome.
The Home Care Aide program is designed to prevent or reduce inappropriate institutionalization of children and adults. There is no age limit. They can provide the following services (please note that each county varies as to the level of services and ability of local agencies to deliver Medicaid waiver home visits): essential shopping, housekeeping maintenance, child care, respite care, family management, parent skills training, child protective services, personal care, and transportation. For more information, contact the local home care aide program nearest you.
319 472-5221, ext. 1202
Outreach Services is an outgrowth of the Iowa Braille School's education program. The purpose of Outreach Services is to assist children with visual impairment, including blindness, to become as independent as possible in all areas of life. Services include low vision services, orientation and mobility, consultation on questions related to the education or habilitation of young children, an assistive device lending program, and adapted or adopted books for visually impaired learners.
The Iowa Department of Public Health exercises general supervision of the state's public health; promotes public hygiene and sanitation; does health promotion activities, prepares for and responds to bioemergency situations; and, unless otherwise provided, enforces laws on public health.
The Iowa High-risk Infant Follow-up Program is a service program to provide in-depth developmental assessments for children who received care in a neonatal care unit during the first 27 days of their life.
The HCBS waiver is a Medicaid (Title XIX) program designed to return or maintain an eligible child or adult in his or her home or community, who would otherwise require care in a medical institution or more restrictive environment. Any child or adult who is at high risk for institutionalization may be eligible for this program. To find out more, call toll free 800-338-8366 or in the Des Moines area call 515-725-1003.
The Iowa Registry for Congenital and Inherited Disorders (formerly known as Iowa Birth Defects Registry) was established in 1983 as a method to monitor birth defects in the state of Iowa. Birth defects in Iowa are reportable conditions and the records of these birth defects are abstracted and maintained in a central registry. The Iowa Registry for Congenital and Inherited Disorders maintains a statewide surveillance for collecting information on birth defect occurrence in Iowa; they monitor annual trends in birth defect occurrence and mortality; conduct research studies to identify genetic and environmental risk factors for birth defects; and promote educational activities for the prevention of birth defects.
MCH programs provide well child care services which include physical examination, immunizations, anticipatory guidance, care coordination, referral and social support services. Pregnant women receive, or are referred, for prenatal and postpartum care. MCH programs work closely with the Supplemental Food Program for Women and Children, as well as other community providers.
This program provides comprehensive health care services to individuals with known or suspected neuromuscular disorders and muscular dystrophy. Educational outreach is provided to families, healthcare providers, educators and other interested individuals.
The Public Health Nursing (PHN) program provides skilled nursing care, information or healthy lifestyle practices, and encourages changes for better health. This service is available to every citizen (of all ages) and is provided locally in every county.
1 800 260-2065
The Regional Genetic Consultation Service (RGCS) is a program which provides diagnostic evaluations and confirmatory testing, information, support, case management, informative and supportive counseling to individuals and families who have a family history of a genetic syndrome, developmental or growth delays, genetic syndromes and adult onset genetic disorders. The program also provides outreach educational presentations to public and professional groups.
The Supplemental Food Program for Women, Infants, and Children (WIC) is a nutrition intervention program for pregnant, postpartum, breast-feeding women and infants and children up to age five throughout the state of Iowa.
University of Iowa
1 800 417-0417
Arc is an advocacy organization of parents and others representing people with mental retardation and other disabilities.
The Autism Society is dedicated to improving the lives of children and adults with autism. They provide information and referral for parents and professionals.
The Brain Injury Association of Iowa is an advocacy organization representing people with brain or head injuries.
CMN is an international non-profit organization dedicated to helping children by raising funds and awareness for 170 children's hospitals throughout North America. Each year these non-profit hospitals treat more than 17 million children afflicted with diseases, injuries and birth defects of every kind. Children's Hospital of Iowa is one of the 170 children's hospitals selected to participate in the CMN.
The Epilepsy Foundation is an organization wholly dedicated to the welfare of people with epilepsy. Their mission is to work for children and adults affected by seizures through research, education, advocacy and service.
IDEAS offer self-advocacy training to Iowans with disabilities and their supporters. Topics include self-advocacy and self-esteem, rights and responsibilities, decision-making, goal setting, and accessing services.
A grassroots network of parents of children with all types of disabilities who want their children to live at home and be a part of our communities and our everyday lives. IFSI works with policy makers to bring about this change.
wIRCCC provides information and training to families, respite providers, and agencies regarding respite services and the benefits to the community, public policy issues.
ISU Extension provides unbiased, research-based information and education to help you make better decisions affecting your family, community, or business.
LDA of Iowa is a group of parents, teachers, school administrators, and others who are interested in children and adults affected by learning disabilities.
Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.
Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.
Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.
Information is available on the United Mitochondrial Disease Foundation Web site at: http://www.umdf.org/site/c.dnJEKLNqFoG/b.3041929/k.BF32/Home.htm
Ronda Eick is the Iowa Ambassador for the United Mitochondrial Disease Foundation. She may be contacted at 319-404-5943, and is available to offer support and information on resources to families.
1 800 450-8667
PTIC provides training and information that meets the needs of parents of children with disabilities in Iowa. They focus particularly on underserved families and parents of children who may be inappropriately identified. PTI also provides training opportunities on the Individuals with Disabilities Education Act (IDEA) of 1997. This training makes clear the availability of, and how to effectively use procedural safeguards under IDEA 1997, including alternative methods of dispute resolution, as described in the act. PTI also assists parents to better understand their children's disability and educational development.
Stickler syndrome (formerly known as Hereditary Progressive Arthro-Ophthalmopathy) is an inherited autosomal dominant genetic disorder. About 1 in 7500 people have Stickler syndrome, but it is suspected that this condition is under-diagnosed. Stickler syndrome affects connective tissues throughout the body, most notably the eyes, ears, face and joints. Sticklers is the most common cause of retinal detachments in children, and is the most common connective tissue disorder.
UHL is the state's public health and environmental laboratory. It is a vital part of Iowa's health-care delivery system providing consultation, training, surveillance and laboratory testing for evidence of most infectious agents, as well as screening and confirmation of many congenital disorders. This division also provides environmental health services including bacterial testing of drinking and recreational waters, and foods and dairy products.
Assists families by identifying and funding services and supports necessary to allow their child with developmental disability (under age 22) remain at home; family's net taxable income must be less than $60,000. Available only to Black Hawk, Cass ,Chickasaw, Clinton, Dubuque Floyd, Jackson, Johnson, Mahaska, Mills, Mitchell, Montgomery, Story, and Wapello counties.
Grants provided to persons or families with a developmental disability. Grants are used to defray special costs associated with enabling a person to remain in his or her own home and to prevent placement in a group residential setting. Grants are used for durable goods such as adaptive equipment, household accessibility modifications such as lifts and ramps, or for unique services needs such as respite care and transportation. The program assists people in finding other resources prior to using the grant money. For more information, contact your local Department of Human Services office.
The emergency assistance program will provide financial assistance based on behalf of needy children and any other members of the household to meet needs that have been caused by an emergency situation and that the family is unable to fulfill. Assistance is available to a family only during one thirty-day period in any 12 consecutive months. Assistance is provided by vendor payment and may include rent, and/or utilities, rent and utility deposits, house payments, and purchase or repair of heating equipment. For more information, contact your local Department of Human Services.
The FIP program, formerly known as Aid to Families with Dependent Children (ADC), provides direct cash grant assistance to needy families with children to assist them in meeting basic living needs as they take steps towards self-sufficiency. Eligibility factors include both financial and non-financial factors. For more information, contact your local Department of Human Services office.
This program consists of monthly cash payments made to families who have a child with a disability. The subsidy is meant to help keep families together by defraying some of the special costs of caring for a disabled child at home. Examples of services include respite care, recreation activities, special foods, parent training, transportation, adaptive equipment, insurance, educational toys, home or vehicle modification, camp, and counseling. For more information, contact your local Department of Human Services.
hawk-i provides health care coverage for uninsured children who do not qualify for Medicaid (Title XIX), and whose family income is between 133 to 200 percent of the federal poverty level (FPL).
Medicaid is an assistance program that pays for covered medical and health-care costs of eligible persons. The program is administered by the Iowa Department of Human Services and is financed by federal and state funds. For more information, contact your local Department of Human Services.
1 800 772-1213
Medicare is a federal health insurance program for the aged (65 and over) and for certain disabled persons. Most persons, regardless of age, with chronic renal disease are eligible for Medicare coverage. One who has experienced kidney failure and is in need of kidney dialysis or a kidney transplant is entitled to a special coverage under Medicare if he or she or one's parent or spouse is insured through Social Security Program contributions.
SSA was designed to provide funds to persons who receive SSI (Supplemental Security Income) or who would be eligible for SSI benefits if their income were not too high.
1 800 772-1213
SSI is a federal program that provides monthly payments and enables state Medicaid coverage for children with severe mental, emotional, and physical disabilities. The family income must meet certain guidelines.
Alliance of Genetic Support Groups is an international coalition of individuals, professionals and genetic support organizations that are working together to promote healthy lives for every one impacted by genetics.
A professional organization dedicated to the attainment of optimal physical, mental, and social health and well being for all infants, children, adolescents, and young adults. Provides education information for families.
The American College of Medical Genetics is an organization composed of biochemical, clinical, cytogenetic, medical, and molecular geneticists, genetic counselors and other health-care professionals committed to the practice of medical genetics.
This web site is a rehabilitation research and training center on public policy affecting families who have children with disabilities. The professionally oriented web site contains research and related information. A separate area is devoted to positive behavioral support.
This site provides fact sheets about birth defects, parent matching opportunities and information resources, including books and links as well as other information.
Office of Genetics and Disease Prevention, Centers for Disease Control and Prevention provides current information on the impact of human genetic research gene discoveries on disease prevention and health promotion. Site includes news stores, scientific literature, announcements, events, and public health perspectives on advances in human genetics.
This web site offers easy access to federal and state statistics and reports on children and their families, including: population and family characteristics, economic security, health, behavior and social environment, and education.
This web site is a resource for families and health care professionals. CPF is a non-profit organization dedicated to optimizing the quality of life for individuals affected by facial birth defects.
This web site provides resources and information to families of children with acquired and congenital heart disease, adults with congenital heart defects and health-care professionals who care for these individuals. Sections include support groups, educational materials and internet links designed for families, adults with congenital heart disease, and health professionals.
This web site provides information for patients and their families, medical personnel, donors, foundation volunteers, and anyone interested in learning about Cooley's Anemia and other forms of the genetic blood disorder, thalassemia.
Disability resources is a nonprofit organization that monitors, reviews, and reports on disability resources such as legal rights, financial resources, assistive technology, housing modifications, childrearing and educational options, transportation, and more.
New financial guide for parents of children with disabilities and other special needs. Included in this guide is information on estate planning, finding the right lawyer or knowledgeable financial planner, wills, special-needs trusts, government benefits, savings options insurance plans and other available resources.
Easter Seals provides services to children and adults with disabilities and other special needs, and support to their families.
The FSH Society promotes scientific and clinical research through education of the public, governmental bodies, and the medical profession; help exchange between researchers and clinicians involved in the diagnosis and study of the cause and treatment of FSHD; collect and distribute information about FSHD, its cause and treatment; foster communication among national and international interested parties, provide support for living with FSHD by assisting in the organization of support groups and by serving as a referral source for helpful professionals.
The AMA has developed these tools to aid both the physician/healthcare provider as well as the patient. Gathering a complete family history is becoming more important as genetic medicine explains more diseases.
This is a national, grassroots clearinghouse for information and education concerning the health care of children with special health needs. Its web site includes a bimonthly newsletter and weekly news update, as well as information about the organization and its publications.
Gene Clinics is an expert-authored, peer-reviewed clinical genetic information resource consisting of concise descriptions of specific inherited disorders and authoritative, current information on the role of genetic testing in the diagnosis, management, and genetic counseling of patients with these inherited conditions.
A resource for educators interested in human genetics and the human genome project.
University of Kansas Medical Center, Medical Genetics
This site contains information on genetic conditions and birth defects for professionals, educators, and individuals. The site also contains information on lay advocacy groups, support groups, and advocacy.
A global collaboration of people and organizations committed to the development and dissemination of population-based epidemiological information on the human genome.
This web site contains a Disability Resources' guide to print and audiovisual materials for parents, educators, and child care providers, as well as service providers.
This site is a non-governmental organization in official relations with the World Health Organization representing more than 30 malformation monitoring programs worldwide. Dedicated to the sharing of data, news, and views on congenital malformations monitoring, research and prevention.
This site serves as a starting point that integrates information, resources, and communication opportunities valuable to parents, family members, caregivers, friends, educators, and medical professionals who provide services and supports to children with disabilities and other related disorders worldwide.
The Iowa Insurance division supervises all insurance business transacted in the state, including health maintenance organizations (HMO) and mutual hospital and health service corporations. They are available for questions or concerns as it relates to insurance in the state of Iowa.
This site is a worldwide resource that provides children with special needs, families and other caregivers with access to comprehensive information and resources.
This web site presents information on this non-profit organization's fight against birth defects. Sections include research, local support, public affairs, and a health library.
This website is a national parent-to-parent organization for parents or care providers of a child with any disability, rare or not so rare disorder, chromosomal abnormality or health condition. The purpose of this organization is to provide support to parents in the form of a networking system that matches them with other parents whose children have the same or similar condition.
The MDA is the source for news and information about neuromuscular diseases, MDA research and services for adults and children with neuromuscular diseases and their families.
The Muscular Dystrophy Family Foundation® serves any individual affected with one of the 43 neuromuscular diseases covered under our program. Because a neuromuscular disease affects the entire family, all members of the family are served.
This web site contains information about Down syndrome, news and events, resources, and information regarding their mission.
Nation's largest and most influential organization of early childhood educators and others dedicated to improving the quality of programs for children from birth through third grade.
This web site focuses on current birth defects surveillance, research, and prevention in the United States. Sections include NBDPN news, other birth defects news and information, related web site links, newsletters and publications.
This site provides information on birth defects and developmental disabilities for families, children, and health professionals. The (NCBDDD) at the Centers for Disease Control and Prevention (CDC) seeks to promote optimal fetal, infant, and child development; prevent birth defects and childhood developmental disabilities; and enhance the quality of life and prevent secondary conditions among children, adolescents, and adults who are living with a disability.
The American Medical Association, the American Nurses Association, and the National Human Genome Research Institute started the NCHPEG. The NCHPEG is a national effort to promote health professional education and access to information about advances in human genetics.
This website is a resource for families, professionals, affiliates and others. This site has information about education, research, advocacy, and news regarding Down syndrome.
The Center provides educational materials and publishes guides, directories and bibliographies, in the area of maternal and child health. The Center also processes information requests from the public, health care professionals and businesses.
This web site offers information, legislation, advocacy and more. This site is especially valuable for its current information and links relating to "hot issues" and legislation affecting children with disabilities.
The collective research components of the NIH makeup the largest biomedical research facility in the world. NIH is part of the U.S. Department of Health and Human Services.
This web site provides basic information about Fetal Alcohol Syndrome (FAS), how to work with FAS children, other links or resources available, strategies and curriculum on FAS.
This web site contains databases where you can read about rare diseases, find a support group for someone affected by a rare disease, policy, newsletters, and new briefs. This site also contains a used medical equipment exchange.
The National Society of Genetic Counselors promotes the professional interests of genetic counselors and provides a network for professional communications.
Teratology Information Services (TIS) are comprehensive and multidisciplinary resources for medical consultation on prenatal exposures. TIS interpret information regarding known and potential reproductive risks into risk assessments that are communicated to individuals of reproductive age and health-care providers.
National PKU News is a non-profit organization located in Seattle, Washington. It is dedicated to providing up-to-date, accurate news and information to families and professionals dealing with phenylketonuria.
Project Participate provides families, educators, administrators and therapists with simple strategies to increase the active participation of students with disabilities in school programs. Supported by a U.S. Department of Education grant (H324M980258), Project Participate facilitates team collaboration and promotes the appropriate uses of technology in the classroom.
This site acts as a parent's resource on newborn screening. The mission of Save Babies Through Screening is to improve the lives of babies by working to prevent disabilities and death resulting from disorders detectable through newborn screening (NBS). They are a national non-profit advocacy organization who is currently run solely by volunteers. Save Babies Through Screening is formerly known as the Tyler For Life Foundation, and is a leader in the national grass roots movement to expand newborn screening.
This association provides member organizations and the public at large through education, advocacy, and other initiatives which promote awareness and support for sickle cell programs and patients.
This web site features a cleft lip and palate support group called SMILES. The group is comprised of families whose children have or have had cleft lip, cleft palate and craniofacial deformities. Sections include an overview of cleft lip and cleft palate management, language and speech development, genetics and patient care after cleft palate repairs.
This web site contains facts about Spina Bifida, research and educational updates, conferences, and links to other Spina Bifida resources.
The Teratology Society is a multidisciplinary scientific society founded in 1960, the members of which study the causes and biological processes leading to abnormal development and birth defects at the fundamental and clinical level, and appropriate measures for prevention.
This web site is for parents and professionals. It serves as a resource guide to find out more about registries and organizations, medical information, genetics, research, journals, and other valuable web sites.
This site provides a multimedia guide to genetic disorders.