Kansas Resources

• American Academcy of Pediatrics - The mission of the AAP Division of Children with Special Needs is to improve the system of care for Children with Special Health Care Needs (CSHCN) by connecting them to a medical home. A medical home is not a building, house, or hospital, but rather an approach to providing comprehensive primary care. A medical home is defined as primary care that is accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective.

• Basic Private Health Insurance - Description of Group and Individual Insurance, HMO, PPO, and POS plans, and Patient Bill of Rights. (Adobe Acrobat Reader )

• Build Your Own Care Notebook - The Care Notebook has multiple uses. A major role of this notebook is to help parents/caregivers maintain an ongoing record of their child's care, services, providers, and notes. This notebook is a great tool in empowering families to become the experts on their child's care. It is also a way to maintain the lines of communication between the many providers and services that help care for a child and their family. Health professionals recommend that parents/caregivers bring this notebook to all medical appointments, therapies, care conferences, on vacations, etc. Health professionals can encourage the use of these notebook by either having them available at the first office visit, upon discharge from the hospital or in the waiting room on a resource table. This notebook should be a team responsibility.

• Car Seats for Children With Special Needs — Transporting Older Children - Some children still need the support of a child restraint even after they have outgrown a standard car safety seat. This might include children with cerebral palsy; decreased head, neck and trunk control; skeletal disorders; and various nerve and muscle disorders. There are forward-facing medical seats that fit children who weigh up to 105 pounds. These seats come with extra pads and devices to help position the child in the seat. Work with an occupational or physical therapist to position your child in these types of seats. These child restraints also come with an extra strap called a tether. The tether, along with the vehicle seat belt, must be used to install the restraint correctly.

• Comprehensive Speech and Language Treatment for Infants, Toddlers, and Children with Down Syndrome - chapter from a 1998 book, this one called Down Syndrome: A Promising Future, Together, which appears online with permission of Wiley-Liss, Inc., a subsidiary of John Wiley & Sons, Inc. Title of the chapter? "Comprehensive Speech and Language Treatment for Infants, Toddlers, and Children with Down Syndrome." More Down Syndrome Articles

• AAP - Emergency Preparedness for Families of Children with Special Needs - In our rapidly changing high tech health care environment, children with very special health care needs are increasing. Kids with high tech gear such as ventriculoperitoneal shunts, gastrostomy tubes, indwelling central lines, tracheostomies, pacemakers, and home ventilators are becoming common in the community. Children with very complex and difficult health care needs which not only include rare genetic and metabolic problems but also those with difficult to manage asthma, diabetes, sickle cell disease, malignancies, and a variety of other problems are increasing.

• Developmental Disabilities Act / Family Support - Discussion of the DD Act, providing funding for Developmental Disabilities Planning Councils in each state to assist people with developmental disabilities to live in the least restrictive environment and to actively participate in their communities by emphasizing family support services. (Adobe Acrobat Reader )

• The Effectiveness of Early Intervention for Children with Down Syndrome - one chapter online from a 1997 Paul H. Brookes book about the effectiveness of early intervention. This chapter focuses on the effectiveness of EI with children who have Down syndrome and describes in detail a number of interventions and their impact upon cognitive development, language and communication, parent-child interactions, and motor and physical development.

• Epilepsy - Resource Library is an online epilepsy resource offering a comprehensive library of materials available for download that will help healthcare professionals better help those living with epilepsy. Find articles such as "Giving Medicine to Infants and Toddlers," "Classification of Epilepsies & Epilepsy Syndromes," and "First Aid for Seizures."

• Every Child Deserves a Medical Home Training Curriculum - The medical home training curriculum has been written at a national level so that communities can customize and add local information. Seven components comprise the curriculum which enables it to be presented all at once in a 1-day program, individually as shorter training modules or sessions at local, naturally occurring meetings. The flexible design of the curriculum enables organizations to customize the program length and target audience.

• Emergency Preparedness for Families of Children with Special Needs - For families of children with special needs it can become even more difficult. Planning for how you will respond is critical and may mean extra attention to details and needs that others may not have to worry about. We need to take care of equipment, medication,  go to special shelters, and notify doctors just to name a few. (Adobe Acrobat Reader )

• Family Voices - Family Voices, a national grassroots network of families and friends, advocates for health care services that are family-centered, community-based, comprehensive, coordinated and culturally competent for all children and youth with special health care needs; promotes the inclusion of all families as decision makers at all levels of health care; and supports essential partnerships between families and professionals.

• For early interventionists: Intro to "the medical home." - The brief described in the bullet above is also intended for early intervention programs. It will help programs learn about the role of the medical home in providing comprehensive, coordinated, collaborative care in concert with the family and other medical and non-medical service providers; The brief also provides strategies for effective collaboration and communication between the pediatric clinician and early intervention programs in the provision of quality, comprehensive care.  (Requires Adobe Acrobat  Reader )

• Fragile X Syndrome - from the National Center for Early Development & Learning at the FPG Child Development Institute.  (Requires Adobe Acrobat  Reader )

• Hearing impairments: Online training for EI professionals - CENTe-R stands for Collaborative Early Intervention National Training e-Resource. CENTe-R's mission is to inform and support graduate-level professionals serving families with infants and toddlers who are deaf/hard of hearing through web-based training that embraces transdisciplinary approaches and connections among ongoing learners.

• Infants and Toddlers with Visual Impairments: Suggestions for Early Interventionists - The intervention needs of infants and toddlers differ considerably from those of children with visual impairments (VI) and blindness who are kindergarten age and older. Early intervention for infants and toddlers should be family-centered while also addressing VI-specific needs. Because significant visual impairments often result in developmental delays and make it difficult to access visual learning environments, infants and toddlers typically qualify for special education services

• List of services specified by the 1905(a) section of the Social Security Act for inclusion under the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT), Medicaid's comprehensive and preventive child health program. (Requires Adobe Acrobat  Reader )

• More Information and Publications from Family Voices

• Motor skill impairments and interventions - "Culturally and Linguistically Sensitive Practices in Motor Skills Intervention for Young Children," from CLAS.

• Welcome to My Family Health Portrait - allows you to create a personalized family health history report from any computer with an Internet connection and an up-to-date Web browser. Information you provide creates a drawing of your family tree and a chart of your family health history. Both the chart and the drawing can be printed and shared with your family members or your healthcare professional. Used in consultation with your healthcare professional, your family health history can help you review your family's health history and develop disease prevention strategies that are right for you.

• The National Center of Medical Home Initiative for Special Needs Children - The goal of the program is to ensure that children and youth with special needs have a medical home where health care services are accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally-competent.

• Quality Health Care for Children with Special Health Care Needs - Quality is a key factor when families, employers, and Medicaid agencies choose and pay for health care for children with special health care needs. Family Voices has identified the following principles to help assess quality systems of healthcare for CSHCN. (Requires Adobe Acrobat  Reader )

• Rehabilitation Act of 1973 - Description of legislation which funds vocational rehabilitation, employment and independent living programs in the states. (Requires Adobe Acrobat  Reader )

• Visual impairment: Training modules online - The Early Intervention Training Center for Infants and Toddlers with Visual Impairments offers multimedia training modules that provide the basic knowledge and skills required to work with young children with visual impairments. Training modules at present include the following topics: Family-Centered Practices; Visual Conditions and Functional Vision: Early Intervention Issues; Communication and Emergent Literacy; Developmentally Appropriate Orientation and Mobility; and Assessment.

• What's a "medical home," and why is it so important for children with special health care needs? - The National Center for Medical Home Initiatives will answer this question in spades. Through the National Center, physicians, parents, administrators, and other health care professionals have access to educational, resource, and advocacy materials, guidelines for care, evaluation tools, and technical assistance.

• Who Are Children with Special Health Care Needs? - Children with special health care needs are those children who have or are at risk for chronic physical, developmental, behavioral or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally.

Contact the Families Together Center near you for more information