Getting Started: Navigating the Maze of Care

We’ve seen the glassy-eyed stare in the eyes of more than one person who is responsible for an individual with developmental disabilities. It seems much too complicated. It seems as though there should be a better way to find solutions for care. VITAL Services is eager to share the knowledge our associates have gained over the past decade and more. We believe we can help you simplify the process and reduce the stress you are experiencing. To get started, please read the typical process and tips below, then give us a call. We’ll buy you a cup of coffee and help you come up with a plan.

Typical Decision-Making Process for Individuals with Development Disabilities

Diagnosis

Early in your life, your physician helps you identify the specific challenges you are likely to face. Medication might be a part of the treatment process, as well as counseling, behavior modification and other approaches. Your physician is likely to always be one of the team members who helps you determine courses of action and treatment.

Assemble a Team

You don’t have to do this alone! However, you are the one responsible for assembling a “team” of individuals to help you make decisions about the individual you are caring for. You might meet with your team informally, or set regular, formal meetings. At some point, your team might become a part of a more formal team established by a provider. Your team members might include any or all of the following:

  • Family members or friends of the family who understand the individual and the issues, or who are simply willing to stand by you to provide moral support
  • Teachers
  • Clergy
  • Primary care physician
  • Specialists
  • Case workers
  • Counselors
  • Mentors

Gather Information

To better understand the individual’s condition and the alternatives for care that are out there, begin searching for information. Look in these places:

  1. Literature from your medical professional.
  2. Information on the Web. (Be sure to verify the accuracy of information you find here, because not all sources are authoritative.)
  3. Information from other families. You can learn from the experiences of others.
  4. Associations. Fully utilize the resources available through associations and organizations that exist specifically for the purpose of helping families cope with developmental disabilities. Click here for a list of common associations
  5. Provider fairs. These are often sponsored by the Nebraska Health and Human Services (HHS) office. Many providers set up tables in the same room, so it’s easy for you to talk with each one, compare services, ask questions and learn.

Register With the State

To take advantage of the many services and resources available through the state of Nebraska, register with HHS early in the process. Explain your situation and tell HHS you are looking for assistance in getting services for an individual with a development disability.

Review Service Options

HHS will tell you all the service options they know for the individual you are helping. They can’t recommend one service provider over another, but they can tell you how to get in touch with providers, so you can visit, talk with the people in charge and decide for yourself which option is best. Don’t depend solely on HHS, however. Contact associations related to the individual’s specific condition, parents of others with developmental disabilities, physicians and others to get recommendations and gather more information.

Select the Best Service Provider

Once you’ve gathered all the information you can, assemble your team and carefully weigh the pros and cons of each. You can eliminate some when you identify aspects of a provider that are unacceptable or unworkable. Narrow down the choices to two or three, then visit the facilities, talk with the people who will work directly with the individual, get more advice from your team, and settle on one provider. After all of the background work you’ve done by this time, allow yourself to feel positive about your choice and confident that the outcomes will be outstanding!

Be a Strong Advocate/Stay Connected

Although your physician or counselor will support you as you look for services, and you’ll receive a great deal of information and assistance from the service providers you choose (such as VITAL Services), the ultimate advocate for the individual you are caring for is you. Gather information and consider all the alternatives, then make informed decisions. Regularly monitor the individual’s progress, and bring in additional professionals as needed. Take time to listen to the individual’s perceptions of his or her experience in the program. Insist on regular update meetings. Ask many questions!

If you are lucky, your search for a provider and experience with care will be smooth and worry-free. However, you are likely to encounter some challenges along the way. Don’t get discouraged. During times of stress, gather your team for support, review all the information and make decisions with confidence. You are taking the time to care, and that’s the best gift you can give the person you are caring for.

At all stages of the process, we hope you will feel comfortable asking for help from VITAL Services and our knowledgeable staff. We exist expressly for the purpose of helping you find solutions and create positive experiences!

Handy Links to Providers and Services

  • Great Plains ADA & IT Center
  • 100 Corporate Lake Drive
  • Columbia, MO 65203
  • 800-949-4232 (Toll-free for IA, KS, MO & NE)
  • 573-882-3600 (V/TTY)
  • Fax: 573-884-4925
  • ada@missouri.edu