The Art of Managing Professionals & Appointments
Parent’s Bill of Rights And Parent Responsibilities
When you have a loved one diagnosed with an autism spectrum disorder, rarely does a month go by when you will not have a follow-up appointment scheduled with some sort of specialist. Scheduling, getting on wait lists, tracking open items, treatment plans, annual (or more frequent) follow-up lab tests, and future events are enough to boggle the mind of the most organized of organizers – let alone keeping track of a team!
You will find that scheduling these events, attending the appointments, and absorbing the information gets easier as time passes. The first year is typically a blur, and when you re-read the reports years later, you may find that you missed a lot of information. Lack of preparation and inexperience have a lot to do with it.
Here are some tips for more successful interactions with the doctors, specialists, and paraprofessionals who work with your child:
First, Your Rights
- You have the right to receive the services or products as advertised.
- You and your child have the right to be treated with respect and dignity.
- You have the right to fully evaluate and research a professional prior to securing an appointment.
- You have the right to provide information for a report or correct errors in a report prepared by a professional.
- You have the right to choose to share (or not share) reports with other members of your child’s team.
- You have the right to be informed of all estimated costs of products or services before they are performed.
- You have the right to receive written reports or follow-up documents within a reasonable, agreed-upon time frame.
- Be on time for appointments or call ahead when running late.
- Be prepared.
- Fill out questionnaires ahead of time – send appropriate file and report information prior to your appointment.
- Be kind to staff – starting on the right foot with a smile can make a huge difference.
- Turn off your cell phone!
- Listen with your own situation in mind. What works for one family may not work for yours.
Remember that not every treatment, provider, or place works the same for every family. The same provider may earn high praise from one parent and the complete opposite from another. Ask questions before you spend valuable time and money with a professional. Parent recommendations can be more valuable than professional recommendations, because parents generally do not have conflicts of interest and are usually more forthcoming about their experiences. For each service you need, we suggest reviewing at least three providers.
Some Suggestions For Good Questions For Parent Referrals
- What is the provider known for?
- How did you hear about the provider?
- What are/were your goals for seeing the provider?
- How long have you worked with the provider?
- How timely is the provider with any necessary reports and follow-up information?
- What were your results?
- What are the fees? Are they reasonable for the products/services provided?
- What did you like about what the provider did for your child?
- What didn't you like?
Once you select a provider, making an appointment can involve a waiting list, which can be frustrating. If you know you want to use this provider, get on the waiting list, no matter how long it is; eventually, it will be your turn. If you find someone else in the meantime, appointments can be cancelled, but be sure to know about any cancellation fees and policies ahead of time!
Some suggested questions for providers
- What are the fees? Is the service covered by insurance, and if so, what is the pre-approval process?
- How long are appointments typically?
- What are office hours? (Some providers offer appointments after school, on weekends, or after hours. If not, it may be wise to schedule appointments ahead of time with school holiday breaks in mind.) Ask whether particular days or a morning or afternoon appointment is preferable for any tests that need to be performed.
- If your wait is long, are cancellation appointments available and how are these offered?
- Is there a cancellation fee for missed appointments? How far in advance must appointments be cancelled to avoid a fee?
- How frequently should visits occur?
- Can follow-up appointments be done by phone, email or Skype? Are the charges the same as in-person appointments?
- What paperwork is needed prior to an appointment (e.g. evaluation forms, new patient and insurance forms, previous evaluations, diagnosis information, etc.) Who should these be sent to? Will the provider review them prior to the appointment?
- Will the provider charge you for time spent reading your paperwork prior to the appointment?
- Should you bring help (as in a babysitter) to the consultation portion of your appointment prior to the child examination? (This is highly recommended for long appointments.)
- How are treatment plans communicated?
- If reports are provided, what are timelines for delivery?
- Who will receive the report? Note: It is important to identify who a report goes to PRIOR to your appointment. This should be done in writing.
- Can appointments be recorded for reference later (versus note-taking during an appointment, which can lead to missing an important piece of advice)?
- What affiliations or associations does the provider belong to?
- Does the specialist speak at or attend any conferences, support groups, etc?
Suggestions for successful appointments
- If you didn’t send them ahead, bring all relevant medical history and test results.
- Bring a buddy. This can be your spouse, friend, older sibling, babysitter, or grandparent. An extra pair of hands for instructions, watching the kid(s), and note-taking during the appointment is very valuable.
- Bring an “appointment bag,” including entertainment such as an iPad/iPod, favorite toy, or activities for long waits. Bring motivating snacks and drinks, but be mindful of any office policies regarding food.
- Do not schedule appointment times during nap time unless it would help for your child to sleep through it.
- Make sure your child has a full, happy belly and a clean diaper (or underwear) before you arrive. Odds are better for a good appointment with a happy kid. Always bring a spare change of clothes, just in case.
- Give your child insight on the day’s events. Explain what is going to happen, how long the appointment should take, and what neat activity follows. Follow up with reassuring input throughout the visit.
You will meet many wonderful providers on this journey. However, you will also meet some who are either having a bad day or are just not a fit for your child’s needs.
- Providers who show up habitually late for appointments without an apology. This happens to everyone sometimes, but it should not occur at every appointment.
- Disrespect or ill-treatment of a child or family member.
- Failure to follow-through on promises.
- Lack of preparation. Providers should not be reading any reports or information sent prior to the appointment for the first time while you are sitting there paying for their time. Granted, reports and files can be thick, and time can be scarce, but a casual reading should occur prior to your appointment.
- Rude, untrained, or unprofessional staff.
- Follow-up or add-on products that can only be purchased in the provider’s office.
Bottom line: Listen to your gut. If something does not feel right, ask questions. If something does not go well, let the provider’s office know immediately. Not every appointment can be perfect every time. Providers are paid for their time, products, or services and the experience should be, at minimum, professional.