Children and Youth with Special Health Needs (CYSHN)
Next Steps: After Diagnosis
Family Support: Family Tools and Resources
On this page...
|AS YOUR CHILD GROWS|
As your child grows, their needs will change and your need for information and resources will change as well. They will vary depending on several things.
- Type of hearing loss
- Degree of hearing loss
- Age at identification of the hearing oss
- Use of amplification
- Age when fitted with amplification
- Presence of other disabilities including sight, vision, motor and cognitive impairments (one in four deaf and hard of hearing children have other disabilities)
- Age when enrolled in early intervention
- Your needs as a family
Ask your child's primary care provider (PCP) about your child's needs. MDH encourages parents to identify a PCP and establish a medical home.
The medical home includes your child's PCP, audiologist and all other sources that provide complete medical care for your child. Understanding health care systems and how to use them effectively is important for your family.
Families best understand their child's strengths and needs, so it is critical that they are actively involved in coordinating their child's services. You will want to have a care plan that meets the needs of your child because you will know when a plan does not work well, and can participate in developing a new plan. Informed families help promote communication with health care providers to assure better care for their children.
In addition to services provided by the state, providers included in the medical home serve patients with appropriate and effective family-centered health care. Providers accomplish this by providing culturally-sensitive care that considers each family's values and lifestyles. Family-centered health care also helps families by making referrals to community-based services located close to their homes.
An important provider of community-based services for families in Minnesota is Minnesota Hands and Voices at Lifetrack Resources. Minnesota Hands and Voices is a parent support program led by parents of children who have hearing loss. They provide early support for families who have just learned of their child's diagnosis and guide them toward resources and services for continued support.
|LINKS TO RESOURCES|
- Unilateral Hearing Loss brochure (PDF: 3 pages / 193KB) This brochure provides you with information about hearing loss in one ear and what you can do for your child.
- Minnesota Parent Roadmap (PDF: 2 pages / 117KB) Learning about Hearing Loss - A Roadmap for Minnesota Families (From Diagnosis of Permanent Hearing Loss through the First Year). Also available in: Spanish (PDF: 4.2MB). Hmong (PDF: 4.2MB). Somali (PDF: 4.2MB).
- A Parent Organizer developed by Children and Youth with Special Health Needs (CYSHN) provides information to:
- Store important information
- Find Minnesota and National Resources
- Update Information as the Child Grows
- Resource Directory for Minnesota Families of Children Who are Deaf or Hard of Hearing: A resource directory of organizations created by Minnesota Hands & Voices at Lifetrack Resources to let parents know about some of the most important resources available to them.
- Deaf and Hard of Hearing Services Division (DHHSD) of the Department of Human Services: Regardless of the type of hearing loss, all deaf and hard of hearing people have unique needs. The Deaf and Hard of Hearing Services Division (DHHSD) is available to help
- The University of Arkansas for Medical Science (UAMS) developed an Early Intervention Toolbox which contains a number of forms that may be helpful in documenting important information about your child. Use the early intervention toolbox to help organize the information you have gathered about your baby. Tools are provided to help you sort out ideas regarding communication options, early intervention resources, and family discussions.
- Information on Hearing Loss in Children is available from the Centers for Disease Control and Prevention (CDC).
- For genetics information and resources:
- Region 4 Genetics Collaborative
- Partnering with your Doctor The Medical Home Approach: A guide for families with children who have genetic conditions - The Guide is intended to be a user-friendly, hands-on tool to support families of childen who have genetic conditions to move forward in obtaining and providing a medical home for their children. The guide provides definitions, examples and tools for families to use when working with the doctor to develop a medical home.
|PUBLIC AWARENESS LINK|
ECHO (Emergency and Community Health Outreach): ECHO is a collaborative that includes public health and safety agencies across Minnesota, ethnic advisory organizations and non-provide gorups to provide health and safety information in multiple languages by fax, phone, on television and on the web during emergency and non-emergency times to people with limited English language skills. ECHO in conjunction with MDH Children and Youth with Special Health Needs, is expanding to offer emergency information to Minnesotans who are deaf or hard of hearing.
|NATIONAL EDUCATION AND EMPLOYMENT LINKS|
Information about the Individuals with Disabilities Education Act (IDEA) is available online from the U. S. Department of Education.
Information on Section 504 of the Rehabilitation Act is available online from the U.S. Department of Education, Office for Civil Rights.
Information about the Americans with Disabilities Act (ADA) is available online from the U.S. Department of Justice.
The Postsecondary Education Programs Network offers web-based information and outlines options available to deaf and hard of hearing students.
A qualified person with a disability is a person who meets skills, experience, education or other requirements for an employment position and can perform the "essential functions" of the position with or without reasonable accommodation. More information about employment is available from the U.S. Equal Employment Opportunity Commission.
Information on this web site was obtained from the Infant Hearing Guide developed in a cooperative project between the University of Arkansas for Medical Science, Arkansas Children's Hospital and the University of Arkansas RRTC and we would like to acknowledge their work.
THIS INFORMATION DOES NOT PROVIDE MEDICAL ADVICE. All content, including text, graphics, images and information are for general informational purposes only. You are encouraged to talk with your doctor or other health care professional with regard to information contained on this web site. After reading this information, you are encouraged to review the information carefully with your doctor or other healthcare provider. The Content is not intended to be a substitute for professional medical advice, diagnosis or treatment. NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE, OR DELAY IN SEEKING IT, BECAUSE OF SOMETHING YOU HAVE READ ON THIS web site.
|Updated Thursday, 02-Aug-2012 09:52:43 CDT|