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Getting Started: Finding Help for Your Child with a DisabilityIf you have just learned that your child has a disability, you might be feeling overwhelmed. In addition to the emotional issues, you are probably faced with the tasks of finding supports, services, and resources to help your child. Where do you begin? What can you do? To help get you started, take these three steps: (1) find services, (2) find support, and (3) stay informed. Step 1: Find ServicesFinding services to help your child is a priority so that your child can begin receiving the help he or she needs to develop to his or her potential. Being able to find services involves educating yourself about your child's diagnosis and needs, being aware of what services are available, and learning how to become an advocate for your child. Learn about your child's diagnosisUnderstanding your child's diagnosis is helpful when advocating for your child's needs. There are many national and local organizations with a focus on a particular diagnosis or disorder. It is also important to find a primary care doctor who is experienced with the unique needs of your child. The right doctor can provide you with more information about your child's diagnosis and help coordinate your child's care. Recommended sections of the OLRS site: Sharpen your advocacy skillsBeing your child's advocate is an important role, but conflicting answers from professionals, a confusing network of systems, and a general feeling of being overwhelmed make becoming an advocate for your child a challenge. Learning about your child's rights is an important first step to becoming an effective advocate, and learning advocacy techniques and tips can make your job as an advocate easier. Recommended sections of the OLRS site:
Find medical and financial assistanceFinding services that provide medical and financial assistance for your child and family can be a challenge. Services may be offered at the local, county, state, and federal government levels, and often involve applying to several different agencies at all of these levels. Some families have case managers and social workers to help with finding services, while other families are left on their own. Many families are simply not aware of the range of services that are available, or have been given incorrect information, and must rely on word of mouth to find out about service options. Recommended sections of the OLRS site:
Find intervention or education servicesWhether your child is an infant, toddler, or school-age, he or she should be receiving some type of intervention or education services. These services are offered as early intervention, pre-school, or special education for children with disabilities. Early intervention services are for children birth through two years who are at risk of having a developmental delay or disability. Pre-school and special education services are for children three years and older who have a disability. These are individualized services that help your child to develop to his or her potential. Services might be either home-based or center/school-based. The services may be provided through an agency, such as your county board of Mental Retardation and Developmental Disabilities, your school district, or a combination of agencies and organizations. Recommended sections of the OLRS site:
Find activities to make your child's day functional and funFor play time and recreation time, your child may need specially adapted toys or other assistive technology to help participate in activities with family and friends. Finding recreational activities, such as adapted sports programs or accessible parks and play areas, may be helpful. Recommended sections of the OLRS site: Step 2: Find SupportFinding support for you, your child, and the rest of your family is important so you can have a stable household. Support resources can be found in a variety of ways, such as by reading publications, getting information from organizations, participating in a support group, and talking with other families. Find help for you to take a breakFinding child care, respite care (respite is a system of temporary care to give caregivers a break with their responsibilities), or summer care his helpful for both you and your child. For some families, these services are necessary so family members can work outside of the home. For all families, these services are necessary to give family members a break from their caregiving responsibilities. Recommended sections of the OLRS site: Take care of your emotional selfBeing the primary caregiver for a child with a disability has its own challenges, whether you are a parent, relative, or foster parent of the child. Finding resources that provide support for your emotional health is important. Recommended sections of the OLRS site:
Find help for the rest of your familyThe impact of having a child with a disability in your family will affect each family member differently. Learn about supports and resources for other children and spouses. Recommended sections of the OLRS site: Step 3: Stay InformedStaying informed about the services, supports, and programs that affect your child is important and will quickly become a part of your day-to-day routine. Families find information by searching the Internet, receiving alerts from e-mail list groups, receiving mailings from organizations, and through day-to-day contact with families and professionals. Find the latest disability-related newsStay informed about the latest disability-related news by joining e-mail list groups, subscribing to newsletters, and checking Web sites regularly for new information. Recommended sections of the OLRS site: Become an involved advocateBecoming a member of an advocacy group will help you to stay up-to-date on changes that may affect your child and the services your child receives. Many groups offer trainings and additional support to help you develop your advocacy skills. Recommended sections of the OLRS site: Plan for the FutureEstate planning is a way to plan for your child's future. Learning about advance directives, guardianships, trusts, last wills and testaments, and other areas of estate planning will help you to make sure that your child continues to have his or her financial, medical, and care needs met. It is also to plan ahead for emergencies. Some emergencies are caused by natural disasters that affect a large number of people and cause great destruction, such as a flood or tornado. Large numbers of people may also be affected in a man-made disaster, such as an act of terrorism. Other emergencies may involve a person or their family, such as an accident or medical emergency. For people with disabilities and their families, emergencies could result in a disruption of services and supports that they need to stay safe and healthy. It is important to create an Emergency Plan now — before an emergency or disaster happens. Recommended sections of the OLRS site:
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