Welcome to Delaware’s Roadmap to Services. Have you been searching for answers and information, but you are not sure who to call or what to ask? This is the place that will help you on your journey. There is a lot to learn, but you do not have to learn it all at once. Click on a location or two to find out more and call one of the resources listed when you are ready. Not sure what to ask? Click on the Family Support building where you will find a listing of organizations that provide emotional support, information, and referrals. Some of these organizations are staffed by parents whose children have special healthcare needs and will use their own experiences to help you navigate your way through the services.
This roadmap includes many resources and lots of useful information. Each location contains information that relates that particular heading. The same resource may be listed under more than one location if the agency or organization offers more than one type of resource or service.
As you move along the Roadmap you will see the term “children with special healthcare needs.” This refers to children with disabilities as well as children with chronic medical conditions.
Delaware’s Roadmap to Services is a resource provided by Family SHADE, the Family Support and Healthcare Alliance Delaware, an alliance of organizations, agencies and families committed to working together to improve the quality of life for children and youth with special healthcare needs and their families.
If you are unable to locate the information you need, call Family SHADE at 1-855-755-7423.
Here are some suggestions and tips when searching for information:
- Knowledge is power, but be careful not to become weighed down by the avalanche of available information.
- Take plenty of time going through the information until you understand it.
- Do not be afraid or embarrassed to ask for help. Asking for help is a sign of strength and will help to ensure that you locate the appropriate services.
- Find out as much as you can about the disability, special healthcare need, or diagnosis. Contact national and local organizations and support groups.
- Ask your primary care physician for information and a referral to a specialist if you need one.
- Other families that have a family member with a similar diagnosis or disability can give you additional insight and emotional support. Contact local support groups or disability specific organizations to connect with other families.
- Do not be misled by the names of agencies; they do not always convey all of the services they provide. An agency’s name might lead you to believe it caters to a certain disability or age group, but that is not always the case. Do not assume you will not be able to receive a service because of income, type of disability, etc.
- Ask if the agency provides services for the type of diagnosis your child has. The agency might surprise you with a “yes” or be able to provide you with other resource options. If told “no,” ask for suggestions about places to call to get the services you need.
- Words may have different meanings for different agencies. You may find that you have to describe your specific needs, particularly when you do not understand the terms an agency is using. For example, if you need assistance with personal care in your home, the person providing such care may be called a home health aide, personal attendant, or home care provider, depending on the agency providing the service. Do not be afraid or embarrassed to ask the meaning of terms that are unfamiliar to you. Asking for explanations or definitions demonstrates a desire for knowledge and encourages those you are speaking with to help you.
- Keep a notebook, Use this when speaking on the phone, attending a meeting, or visiting your doctor.
- Contact Delaware Family Voices about the Care Notebook training
Here are some general questions to ask when making call:
- What are the eligibility requirements?
- Is there a cost?
- Does insurance typically cover this service?
- Is there a waiting list?
- Can you do an assessment or evaluation to determine what services my child qualifies for?
If you need help searching the database or connecting with services, call us toll-free 1-855-755-7423 (1-855-755-SHADE)