Calling for Help!

Sooner or later, you have to make those scary phone calls: the ones where you try to track down services for your child with disabilities who is rapidly becoming an adult. Government agencies, adult service providers, and insurance companies can hold the answers to the future, but you have to face impersonal menu options, confusing acronyms, and aloof professionals who don’t seem to realize how very emotional this whole process is for you.

There is no magic wand that will solve this problem, but what follows are some suggestions passed along to me by parents, colleagues, and friends that may help make these “cold calls” a little easier.


THE BIG THREE
Be prepared— Don’t start the process when you’re rushed. Relax. Make sure you have paper, a pen that works, a backup pen for when that one runs out of ink, and a reasonable amount of time.
Don’t give up—You have the right to information nand respectful service. Be patient, but be persistent. Realize that sometimes it may take you ten calls to find out what you want. No one person or organization has all the answers.
Try not to put people on the spot—Defensive people are not helpful people. Kindness works better than pressure. NICE MATTERS.

BEFORE YOU PICK UP THE PHONE
Review who, what, where. If you have a brochure or a print out, underline key points, names and phone numbers of people or organizations that you want to talk to or know about.
For each call, make a list of questions you what to ask. Write them down.
Be clear about your needs. If you struggle to explain what you want, the person on the other end will be struggling, too.
Have a notebook or other organizer in which to record your information. Don’t put it on little scraps of paper that can get scattered and lost. Try creating columns or headings at the top of the page: one for the name of the person, another for the name of the company or agency, another for the phone number. Have at least one page for each agency you speak with: leave plenty of room for note-taking. Jot the date next to each entry. That way, if you get a different answer, you can say “but on the 10th of last month, I spoke to John who told me _________.”
Establish a coding system for yourself as you take notes. A check can mean you got through to a person. A minus can mean you left a message and are waiting for a call back. A star can mean that your problem was resolved.
Gather information and materials that you will need. Are you talking to the Social Security office? You will likely need your SSI number, and the number of your child. Are you inquiring after a service that requires certain scores on a particular test or eligibility? Have that information in front of you before you even begin.
Prepare yourself mentally. “Psych” yourself up. Practice a little role-playing if it will calm your jitters and get you in a good frame of mind.
What time of day works for you? Are you a morning person? If you are, make your calls then. Arrange for distractions to be put on hold, so you can be alert. Turn off the television. Send younger siblings to the neighbors or make the calls during daycare hours or nap time.

MAKING YOUR CALLS
Try to make the pitch of your voice low and calming. A voice in a high register apparently can be disturbing to some people.
Be modest. Tell the person on the other end of the line that you are an amateur, and that you are looking for guidance. Enlist sympathy and get help. If you act like a know-it-all, the person with whom you are speaking may presume that you don’t need new information. In other words, it’s better to hear something twice than not to hear it at all.
If you are calling someone you think you will need to call again try to establish a relationship. Find out the person’s name and some personal things if at all possible. Next time you call, reference the information from before, and you will have an ally instead of a stranger on the phone.
Avoid yes or no questions. They often lead to dead ends. Phrase your questions in such a way that you leave the door open to deeper information. Consider these two questions
1. Do you know where I can find accessible bus service?
2. Where can I find information about accessible bus service in our town? Question #1 only leaves room for a yes or no answer. With question #2, you open the possible for deeper dialogue. The point is to always leave people room for suggesting possibilities.
Be empathetic. Remember you are talking to a person. “I realize it’s late in the day and you must be tired, but I really need your help.
Cultivate a mentor. Compliment helpfulness, even if you didn’t quite get what you needed. The next time your new mentor will be more likely to go the extra mile to help you.
If the person you are calling is not in, rather than just leaving a call back number, find out when he or she is expected to return. You may discover that the woman you wish to talk to has just left on her honeymoon, but someone else is taking over her responsibilities, and you can get an answer right away.
If you are transferred to voice mail, leave a short but specific message. Suggest a specific time to have your call returned. This can cut down on phone tag.
You have a right to information, especially from public agencies. Be polite, but don’t allow yourself to be brushed off. If you have really tried to get help, but you are meeting roadblocks, ask to speak to a supervisor.
Always get the name of the person with whom you are speaking. Later, if you get conflicting information, you can say, “But Ms. Smith from the Independent Living Department said _______________.”
We don’t have videophones yet. You can cultivate any persona you wish. Try making calls wearing business clothes. Does it make you feel more focused and in control? Another time, try dressing in jeans and a tee shirt. Are you more comfortable and less stressed? Do what works for you.

IF AT FIRST YOU DON’T SUCCEED……
The process of untangling new vocabulary, rules, regulations and services can be daunting. Be aware that, unlike Special Education Services through the public schools, Adult Services are not compulsory. Agencies don’t have to, and likely will not, provide the same services that schools do, like Speech Therapy or Occupational Therapy or transportation. Be willing to look at possibilities from another direction. Be ok with letting go of some of your preconceptions. Think of things from a big-picture perspective.
You may encounter a whole new way of talking about things. Your young adult is a “client” or a “consumer,” not a student. Special Education provides each student with an IEP—and Individual Education Plan. Adult service providers often write an ITP for their clients: an Individual Training Plan. These plans may be reviewed yearly, or they may not. The best advice is to keep an open mind.

There is more than one way to get information or to resolve a problem. It isn’t always easy, and there are no guarantees, but if you use some of these suggestions, you may increase your odds.