PointstoRemember

TIPS FOR IMPROVING ON YOUR SELF-ADVOCACY SKILLS

This points are very important to share with the professionals that are working with you and your child. I took a copy to my physician and said he should post this in the physician's lounge. Because this is how everyone wants to be treated.

Dear Professionals: What Parents Want to Tell You
By Muriel Hykes, March 1999

1. Never predict the outcome for a specific case. You can give general advice, but caution that nobody care predict how this child will turn out.
2. Do not write off a complaint as Goes with the syndrome. Just because a child has one diagnosis, does not mean that all his other problems are due to that.
3. Refer the parents to a parent-support group. This will save you a lot of questions as well.
4. Be open. Realize that the parents are going to be looking for a cure and will pursue all avenues. Respect that. The parents are supposed to be the cheer-leaders.
5. When the parents are depressed and in shock, you be the cheer-leader. Find something good to say about the patient's development. Praise the parents.
6. Do not promote a therapy mindset. They should take time to enjoy the child as a child. And constant therapy appointments are no fun for the child either. Child first.
7. Promote a team approach to the child's rehabilitation, practice family-centered care. Do not be surprised if other doctors have told the parents conflicting information or failed to tell them something. Coordinate care with all other team members.
8. Understand that most parents are new to this...all the medical terms, conditions and stuff. So please go slow and be patient with us. But on the other hand, recognize that some of us are very well versed on our kid�s situation, and you need to address us as your peer in the treatment of our child.
9. Most importantly, remember that your patients are little human beings who feel and hear, and do things just like other people. It just takes them a longer to achieve those goals. Be careful how you talk about them in front of them. Self-esteem, confidence, and acceptance major needs for everyone. Imagine what the child can become.
Dream big.
Email: [email protected]
Web Site: http://www.drmom.cc

The Ten Commandments for Parents of Handicapped Children

1. Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.
2. Never underestimate your child's potential. Allow him, encourage him, expect him to develop to the best of his abilities.
3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice and support.
4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.
5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.
6. Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.
7. Be honest with your feelings. You can't be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.
8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.
9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.
10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.
Author Unknown

HELPFUL HINTS FOR FAMILIES WHEN LOOKING FOR HEALTH CARE FINANCIAL ASSISTANCE

1) Always get the name and title/position of the person you speak with about benefits; note, date, what was discussed and the outcome of the conversation. Keep copies of all correspondence - sent and received - related to financing and, if possible, make copies of all applications completed for your child (this will save time later if forms are lost or similar information is needed). Keep a notepad by the phone and carry it with you to doctor/therapy etc. appointments.
2) Follow up letters to people you spoke with who are helpful. Verbal agreements do not count. Sum up your conversations and list each agreement or decision reached. Be sure to sign and date your letter. At the end of your letter, include a statement like this: The above is my understanding of our phone conversation. If you do not agree or have any points to add, please contact me within five working days. If I do not hear from you by then, I will assume you agree with this letter.
3) Be specific about need(s) and why you are requesting services. Personalize your situation. Include a photograph of your child with your correspondence; this may help the financial reviewer visualize your child's needs.
4) Provide all helpful information at the beginning.
5) Ask for a copy of your child's hospital discharge summaries, major follow up/clinic report and educational reports. Families should keep a permanent folder of these reports. Copies can then be made.and immediately submitted with financial program applications). This will save weeks of processing!
6) Never, never become openly angry with red tape. Do not lose control.
7) Patience - Some programs take weeks to months to get approval, or worse yet, to be denied. If the process seems unnecessarily slow, call and ask for a status report on your application (you can find out if information is missing or what can be done to get it moving).
8) Ask your child's nurse practitioner, physician or provider if they are willing to accept assignment of benefit, which means whatever insurance or Medicaid will pay. Remember to ask this prior to your child's appointment and not after you receive a bill.
9) If you have an outstanding medical bill. contact the provider to see about a monthly payment plan. Many are willing to arrange a minimum payment so your account is not turned over to a collection agency. Sometimes, they will write off part as a non-collectable bill.

1) Write down a list of question or points before the doctors appointments. Even go to the extreme of sending him a copy of the list of questions or issues you would like to discuss with him before the appt., (approximately one or two days before). If you have articles that would back you up on the issues you are wanting and why. That helps alot.

2) Make notes of what you asked and are told.

3) Document everything. At every appointment, every phone call, who you talked to, what was discussed and date and time. And if problem was resolved or what date they are suppose to get back to you.

4) Anticipate

5) Patience-I know its hard to be patient and sometimes time is upmost important. But if you can't resolve it on the phone calmly, then I found it easier to sit and write a letter. Then have 2-3 of your friends proof read it, before you send it. And if you write a letter make sure you make it short as possible, and to the point of what action you want and when you expect to hear from them. Usually two - four weeks, unless it is urgent. Them let them know it is urgent and why it is urgent.

6) I've learned to get copies of everything in your child's records, everything that is documented on your child, including copies of MRI's, X-Rays and video scans. And I would suggest you don't leave the hospitals, or clinics until you have them in your hands. Take it from me things get misplaced very easily. Than you always have it with you for your appointments.

VITAL POINTS TO REMEMBER
1) Families provide the majority of health care for children, for free. Some provide highly skilled procedures for children with complex medical conditions in their own homes.

2) A child may need special health care in many settings--home, school, day care, church, etc. Assuring continuity of care requires comprehensive, coordinated approaches.

3) Communities ought to help families, readily. Families shouldn't be forced to beg and wait endlessly or ruin themselves emotionally and financially before help is offered.

4) Most families are responsible, cost-conscious, and reluctant to seek public help. Only the rare few are out for all they can get.

5) Professional Interventions should build on rather than supplant the strengths of families and their natural sources of support.

6) Families of children at risk of institutionalization should have whatever it takes to keep their children at home for as long as possible.

7) The standard for home care should be as good and more family-centered than institutional care.

8) Resources and information are in constant flux. You may need to go to the top for up-to-date information--to those who actually write the rules and regulations.

9) It's wise to line up extra resources. People don't always show up but surprises do. Think worst-case scenarios, spread costs around, and develop back-up systems.

10) Never give up. More resources are available than any one knows. Programs change. Exceptions to policy are possible. Can-do people are out there--track them down.

KNOW YOUR RIGHTS AS PARENTS
You have the right to:
Be treated with dignity and respect by the physicians and staff.
Have all your questions answered in language you can understand.
Be told about all possible treatments available.
Decide the best means of treatment for your child.
Disagree with the recommended treatment and seek a second opinion.
Ask about local agencies/associations for more information and resources.
Inform the physician or agency if you are unhappy with the care you have received.
Get all care instructions in writing.

Dream big.
Email: [email protected]
Web Site: http://www.drmom.cc