When our daughter was just a newborn in the NICU at our local Children's Hospital, I was both excited and terrified to bring her home. I just assumed that they would send us home to fend for ourselves. How grateful we were to learn that there were programs in place to help us along this journey.........funding for medical supplies, funding for family relief, and funding for night nursing. I don't think we would have slept much in the last 5 1/2 years had we not received night help.
|Our daughter at 5 days of age just moments before we learned she |
suffered a severe brain injury at birth. Dec. 2003
|Caring for our daughter.|
Photos by Erin Egan
1) Set the Stage: In the first 1-2 paragraphs you need to give the reader a brief description of your situation so that they have some background information to go on. It is important to leave emotions out of it. Simply write the facts.
2) Identify the Problem: After the reader gets an idea of what your particular situation is, let them know why you are writing and what the problem is.
3) Offer Solutions: This is really important!! A letter written that is negative and full of complaints will likely not be taken seriously and will result in the recipient becoming defensive. By offering some ways that the problem can be rectified, you are demonstrating that you are willing to work towards finding a solution. It also shows that you have thought about this and that you are not just complaining for the sake of complaining.
4) Stating Your Expectations: After you offer some possible solutions and the benefits to changing the way things are currently being done, you can then close your letter by stating what you expect. This part needs to be firm, not wishy-washy. For example, "I expect to hear from you very soon to arrange a meeting in person to discuss this further." will get more attention than, "I hope you don't mind me writing and I hope to hear from you if you're not too busy."
After the initial letter is sent off, give the recipient three weeks to acknowledge that they have received and read your letter. If after three weeks you do not receive a response, then you can write a follow-up letter. This letter is brief and to the point and should have the original letter attached to it in the event that the first letter got 'lost' somehow.
There is a skill to writing an effective letter of this type. If you have a letter like this to write but worry that you will not be able to get your thoughts on paper, ask a friend or family member to help you. A well written letter of this type can get things moving. Also have someone edit your letter to make sure it doesn't contain spelling/grammatical errors.
Finally, if your letter writing gets you nowhere which is often the case when dealing with government officials, then your next letter may need to be one to the media. Make sure to send a "thank you" note to the recipient of the original letter and let them know that since they were obviously unable to help you that you feel you have no choice but to take your cause to the media. Just watch how fast you get a response.
Here is a sample letter that I wrote a couple of years ago to our local Member of Parliament:
August 25th 2008
Dear Mr. John Yakabuski;
I want to bring your attention to an issue that is not only affecting our family specifically but many families in your riding and across the province. We are the parents of a five-year-old child with severe special needs. As a result of the complex care involved with our daughter we receive much needed and much appreciated help from various pots of funding provided by the government to care for our child at home. One of these support systems is night nursing since our daughter is fed exclusively by gastronomy tube due to risk of aspiration. We have been informed that as of August 26th 2008, we will go from consistent night nursing of six nights/week to two nights/week due to the severe shortage of nurses. Presently, our case manager at the Community Care Access Centre (CCAC) is working closely with local agencies to come up with some type of plan to ensure that we receive as much care as possible until this problem can be resolved. Unfortunately, we expect that the problem of nursing shortages is only going to get worse as time goes on.
Our daughter suffered a severe lack of oxygen at birth (Dec. 5th 2003) resulting in a significant brain injury. Consequently, she was diagnosed with severe cerebral palsy and also suffers with Gastroesophageal Reflux Disease (GERD). She receives many medications to assist with her digestion, spasticity and anxiety and as mentioned above, she is exclusively g-tube fed. Her care is extremely complex and therefore she cannot be cared for by family members/friends, etc. but requires specially trained caregivers. We have two trained Family Relief Workers who each provide 18 hours of day care per week. Since our daughter was just over one year of age, we have received night nursing support, which started at 2x/week and has increased to 6x/week as her care has increased in complexity. We have had our primary nurse with us for the past 3.5 years but due to recommended bedrest by her OB, she will be on permanent leave as of August 25th 2008. At present, there is no one to replace her. The other two nurses who are trained to care for Meredith each do one night per week and will try to take on an extra shift where they are able.
As the beginning of September approaches, I am very concerned for the well-being of our family in managing the one-on-one care of this child while doing so in a significantly sleep-deprived state. The funds provided by the provincial government for the night nursing care will be sitting unused with CCAC. Meanwhile, our family, as well as many others, are entering into a crisis period with no end in sight. One of our two remaining nurses will be done working for the agency in December, as she, too, is expecting a baby.
Providing the extraordinary, on-going, one-on-one care for a child with severe special needs is draining at the best of times and would be impossible if we did not have the support of relief workers and night nurses. Our daughter is extremely dependent and must have a caregiver with her every minute of the day and night. She does not nap and nights are often unpredictable with episodes of retching, discomfort and wakefulness for up to three hours at a time. On the nights when we are without night nursing support, my husband or I will get about 5 hours total of broken sleep. Her day begins at 5:30am and she does not go to bed again until 7:30pm. Our very real concern right now is that in a very short amount of time, we will become physically and mentally drained without this necessary support that we have been receiving up until this point.
We are asking the government to take this situation very seriously and to give it immediate attention. By considering the solutions that I am proposing (see below), the government will not only be protecting the well being of children and their families but will also save significant amounts of money. Presently, our nursing agency bills the Community Care Access Centre approximately $40/hour. About half of this is used to pay the nurse’s hourly rate and the other half is used for administrative purposes. With self-directed funding, the middleman is removed, so to speak, and dollars are saved. This would also allow families to have more hours in relief support as the dollars would stretch further if the hourly rate was $20/hour as opposed to $40/hour.
- That families be given the option of self-directed funding when a service cannot be provided due to a shortage of staffing within an agency
- That families be given the option of hiring their own staff whom they will train and monitor therefore not having to depend on an agency that is clearly unable to provide the necessary staffing
- That funding remains in the hands of an agency to prevent abuse of this system and that the family invoice the hours of their worker (s) to that agency. Monies will then be directly deposited into the family’s bank account and the family will pay their workers accordingly (i.e. Special Services at Home format)
- That families whose children can be cared for by trained caregivers other than nurses be given the option of hiring and training these caregivers so that the nurses can be used for the families who absolutely have to have nursing care (i.e. where monitoring/ clinical assessments are necessary)
We urge you to give this matter your immediate attention and to raise this issue in the Legislative assembly on our behalf. The well being of our daughter's primary caregivers (her parents) is paramount and in order for us to continue to care for her at home, where she belongs, we need to work towards alternate solutions in spite of the nursing shortage. I look forward to hearing from you as soon as possible. I can be reached at ***-***-****.