No matter how great self-directed programming is, it can't solve this. I wish I could say that a disastrous medical appointment is the exception, but it isn't. It is the norm. I would like to know what MY blood pressure is each time I have to take V to the primary care doctor, the psychiatrist, the gynecologist, or the hospital.
The variable most likely to CAUSE a preventable problem is the wait. If I try to bring in stickers or coloring book and crayon, she won't stop doing it to cooperate with the exam by the nurse or doctor. If I bring in a portable DVD, the content of the movie can agitate her. There is nothing I can do to reduce the chance of a problem, short of keeping the entire event as short as possible.
It doesn't matter if I warn the nurse that V can't tolerate a very long wait and that the window of opportunity to be able to examine her with cooperation or ask me questions is short. It doesn't matter that I explain that if she is in the waiting room too long, she will get tired and decide to leave and won't come back, and that there will no stopping her. It doesn't matter that I tell them that if they keep us waiting in the examination room too long, she may have a melt-down, becoming aggressive and destructive. I explain to them that she should wait in the car until they are ready to see her. I sign her in and wait in the office, while my staff or husband wait in the car with her until the nurse gives me the sign that the doctor will be free in a few minutes, and then we bring her inside. Inevitably they keep us waiting inside with her for another 15 or 20 minutes before the doctor comes, and my tension rises each minute in anticipation of the tantrum that may occur any minute, know that the chances are increasing with each minute that we wait.
Today I had to take V to the Primary care doctor to get a form filled out for the dentist and the hospital to clear her for anesthesia for next weeks dental cleaning.
This is a new doctor, because the pediatrician said at the age of 22 it is time for her to go to a grown up doctor. We arrived on time for a 2:00 appointment, only to be told that the doctor was not there and would be another 15-20 minutes before he arrived. I said we would leave and come back in 20 minutes after explaining my daughter's inability to wait. Off we drove, and I returned 20 minutes later and went back inside the office by myself. Now I was told that he would be arriving in a couple of minutes, but that there was another patient ahead of us that he would see first. She couldn't have told me that the first time that arrived for the appointment? I explained that I would wait in the office and keep V in the car with her staff until it was time for the doctor to see her. It was 2:20. About 2:30 the nurse said to bring her into the office and we went back to the examination room, and waited. The nurse did the usual blood pressure and weight check and then left us to wait for the doctor.
After another 15 minutes, I explained that we were running out of time for many reasons. I couldn't guarantee how much longer I could hold V in the office as she was getting restless. Second, she had soaked through her depends undergarment and was in wet pants and I had no way to change her into dry clothes until I got home, and third, my staff were nearing the end of their shift. "Well, he is still with the other patient and there is nothing I can do", she said. Finally, after 3:00 the doctor came in and time had run out for V. We had the feared meltdown and she had to be carried out to the waiting room by all of us, scratching away at our hands. We calmed her down enough to get her back into the car without an exam, in the rain, and we were all soaked. I came back in, alone, to get the form I needed and waited while he filled it out. My paper took 5 minutes, but I had waited a hour while he spent 40 minutes with the first patient. My daughter had an avoidable tantrum had the office had the courtesy to reschedule our appointment for a more likely time for actual treatment to occur. And yet, there is a large sign telling the patients that they will be charged $50.00 if they cancel their appointments with less than 48 hour notice. I got my staff back home for the end of their shift at 3:30 exactly, which is crazy when I only live 10 minutes from the doctor's office and had a 2:00 appointment.
None of the medical offices that we visit are any more sensitive to the difficulties of treating a patient that is the size of an adult, filled with tension and anxiety and unable to understand reason. They make these appointments nightmares for all involved when they could make it so much easier on everyone if they tried. Why is it so hard to get through to medical personnel? Why is it so hard to understand that we can not bring her into the facility until they are ready to treat her. What is it about, "She can't tolerate the wait and will become aggressive if we try to keep her waiting too long." that they can't understand?
She needs the medical treatment, but I am the one completely stressed out when it is done.
Friday, July 17, 2009
Thursday, July 16, 2009
Medicaid Dental Care: After age 21
Here is a shocker. The same preventative dental care procedure, deep cleaning or scaling that is covered under medicaid for children up to age 21 is not covered after age 21. According to V's dentist, the cost for this procedure is $1,000. Here you have a person who is unable to understand why they should tolerate uncomfortable and invasive work in their mouth, so they have to be under general anesthesia to get any dental work done, and because of the risks associated with general anesthesia they can only get this work done once every couple of years, so a deeper cleaning is necessary to prevent gum disease and tooth decay. This is especially true of an individual who does not have the motor skills to brush or floss their own teeth and will only hold their mouth open for someone else to do it for a limited amount of time.
According to Doral Dental, which is the dental insurance provided by state funded medicaid, the procedure is not covered for patients over 21 years of age, and there are no exceptions based on need. What if my daughter had no family who would foot the bill and was living in a group home? The insurance would rather pay for restorative work after the damage is done than to pay for the prevention?
I have contacted our resource coordinator to find out what options we have and found out that there is a fund for medical situations that insurance won't cover. She told me to fax and mail the invoice for the procedure to her and she would submit it to the committee for consideration. Hopefully the request will be approved. As a back up, I could request that funds from V's New Directions budget be re-directed from other services to this expense, but then she wouldn't have the money to receive the other services.
I don't understand why the same procedure would be covered for a child or teenager, but not for an adult. The need does not change or the benefit of the procedure, based on age. Here is another thing that needs to be addressed by health care reform.
According to Doral Dental, which is the dental insurance provided by state funded medicaid, the procedure is not covered for patients over 21 years of age, and there are no exceptions based on need. What if my daughter had no family who would foot the bill and was living in a group home? The insurance would rather pay for restorative work after the damage is done than to pay for the prevention?
I have contacted our resource coordinator to find out what options we have and found out that there is a fund for medical situations that insurance won't cover. She told me to fax and mail the invoice for the procedure to her and she would submit it to the committee for consideration. Hopefully the request will be approved. As a back up, I could request that funds from V's New Directions budget be re-directed from other services to this expense, but then she wouldn't have the money to receive the other services.
I don't understand why the same procedure would be covered for a child or teenager, but not for an adult. The need does not change or the benefit of the procedure, based on age. Here is another thing that needs to be addressed by health care reform.
Wednesday, July 15, 2009
Regrouping
Lately, the time spent on the program has been greater than at any time since the very beginning.
Replacing staff as they leave is time-consuming. I have been lucky to have such stability for so long in such a transient area, but now that one of the support staff are leaving, it is necessary to go through all of the steps of filling that position. So, time is spent creating an ad, checking responses to the ad, sorting through resumes, setting up and conducting interviews, calling references, completing background checks and getting all the new employee paperwork completed, and then conducting training for the new employee. I found one new employee and may have another as well, to split up weekend hours. There is the anxiety of not knowing if it will work out well, in spite of all the due diligence, until they are actually in the job and doing it.
The second occupational therapist was here for her evaluation last week. I didn't feel sure it was a good match and then the agency that sent her here tried to hike the fees for services waaay up, even though the budget had been stated in our first phone call. They are asking for fees so far out of line with other OT's that I have spoken to that I am turned off of working with the agency at all. I will keep looking until I find the right person for the job, however long that takes.
I have been researching the trike options for V for Special Olympics, but finally decided to buy the most basic trike to get started and evaluate whether she needs a better one after this season when I know if she likes cycling and will continue to do it. So, the trike has been ordered and will be ready for pick up by the end of the week. We will try to get practice in at home, first, and then join the others for practice at the park.
I think that the time I have to spend on her program will settle down to normal in August. New staff will be trained and in place. The new psychiatrist and primary care doctor will have been seen for the first time, and V's dental cleaning and whatever additional dental care is needed will be completed at the hospital for this year. I will still need to find a new adapted PE/Aquatics instructor and a new OT, but I have faith it will happen in time.
Since V can not ask to phone her extended family or former teachers to say hi and keep those relationships going, I have created a Facebook page for her, and I update it frequently so that those people can feel involved in her life, see her photos and know what she is doing. Many of her extended family live too far away to visit, and this is one way to keep everyone informed. Now, even her 2nd cousins in Texas can feel as if they know her, even though they have never met. V can use all the family and friends she can get.
I think that the amount of work it takes to create and maintain a self-directed program depends on how involved you make it, and it increases, decreases, and increases again. If I hired a support broker, there would be a lot less work for me, but also less money in the budget and less control over the outcome and timing of everything. Those are the choices that must be made. It is manageable now, even when it is more time-consuming than it was 3 months ago. Anytime a staff person or vendor leaves and must be replaced, it will be this way, or if a new activity is added on like SO cycling.
Replacing staff as they leave is time-consuming. I have been lucky to have such stability for so long in such a transient area, but now that one of the support staff are leaving, it is necessary to go through all of the steps of filling that position. So, time is spent creating an ad, checking responses to the ad, sorting through resumes, setting up and conducting interviews, calling references, completing background checks and getting all the new employee paperwork completed, and then conducting training for the new employee. I found one new employee and may have another as well, to split up weekend hours. There is the anxiety of not knowing if it will work out well, in spite of all the due diligence, until they are actually in the job and doing it.
The second occupational therapist was here for her evaluation last week. I didn't feel sure it was a good match and then the agency that sent her here tried to hike the fees for services waaay up, even though the budget had been stated in our first phone call. They are asking for fees so far out of line with other OT's that I have spoken to that I am turned off of working with the agency at all. I will keep looking until I find the right person for the job, however long that takes.
I have been researching the trike options for V for Special Olympics, but finally decided to buy the most basic trike to get started and evaluate whether she needs a better one after this season when I know if she likes cycling and will continue to do it. So, the trike has been ordered and will be ready for pick up by the end of the week. We will try to get practice in at home, first, and then join the others for practice at the park.
I think that the time I have to spend on her program will settle down to normal in August. New staff will be trained and in place. The new psychiatrist and primary care doctor will have been seen for the first time, and V's dental cleaning and whatever additional dental care is needed will be completed at the hospital for this year. I will still need to find a new adapted PE/Aquatics instructor and a new OT, but I have faith it will happen in time.
Since V can not ask to phone her extended family or former teachers to say hi and keep those relationships going, I have created a Facebook page for her, and I update it frequently so that those people can feel involved in her life, see her photos and know what she is doing. Many of her extended family live too far away to visit, and this is one way to keep everyone informed. Now, even her 2nd cousins in Texas can feel as if they know her, even though they have never met. V can use all the family and friends she can get.
I think that the amount of work it takes to create and maintain a self-directed program depends on how involved you make it, and it increases, decreases, and increases again. If I hired a support broker, there would be a lot less work for me, but also less money in the budget and less control over the outcome and timing of everything. Those are the choices that must be made. It is manageable now, even when it is more time-consuming than it was 3 months ago. Anytime a staff person or vendor leaves and must be replaced, it will be this way, or if a new activity is added on like SO cycling.
Monday, July 6, 2009
One Year into Self-Direction
This is the first week of year 2 under the self-directed program called "New Directions Waiver" for V and our family. It's a good time to take a look at where we are and what we have accomplished. It's a good time to look at what we still need to do and what our goals for the next year should be.
We were fortunate to be fully staffed for personal support staff from the beginning of ND. We were lucky to have a special educator to continue with us from school into the adult program.
What I needed to find, as a support broker was a speech therapist. One of the bigger goals I had for V was to reduce her frustration by increasing her ability to express herself. We now have a great Speech Therapist coming once a week for an hour and I see it making a difference. V is using a Tech/Speak device in a purposeful way to ask for things she wants to do. In some cases we have switched from generic symbols to digital photographs in our picture symbols in hopes that V will understand them better. Currently we are using a mix of both.
I also needed to find an Occupational Therapist. Impaired motor skills continue to limit V's ability to perform basic skills and she deserves the support of someone who can help her continue to improve her function and independence. I had an evaluation a few months ago for an OT, but it didn't work out to even get started. This week there is an eval scheduled with another OT and I am hopeful that this one will agree to work with V. The obstacle has been the desire to have services provided in the natural environment instead of in an office. Doing this will eliminate the need for V to transfer skills from an office to her everyday life. Now that Special Olympics cycling is beginning, I can really use the help of an OT to assist me in how to teach the pedaling, steering and braking skills V needs to acquire. Progress in performing tasks has been lacking this first year because of a lack of an OT to help us.
About half way through the year, I found someone to do adapted aquatics instruction who was wonderful, but now has been promoted at her full time job and is trying to help us find a replacement. In the meantime, we are without an instructor once again. I saw V working on floating, kicking, blowing bubbles in the water and learning to use the slide at the pool. She also helped V to learn to use the stationary bike when she wasn't in the mood for the pool.
We have made great progress in therapeutic horseback riding in this first year. We went from minimal participation on V's part to riding a full 30 minutes and asking for more each time. We learned that it was important to make the caregivers a part of the lesson so that she felt safe enough to remain on the horse.
V has learned to enjoy her community on a daily basis this year. She can use the library to choose videotapes or look at magazines, and seems to choose this outing each Monday morning, creating her own routine.
She can enjoy the experience of eating in a restaurant and has increased her ability to sit and wait for her food. We are using photos to give her greater choice about where to go and what to order.
She transitions much better than she did a year ago. For many years she would not leave the house without me, but now she happily gets in the car and goes with her caregivers. She can go to 2 or 3 locations each day, in and out of the car and the transition between the car and these locations is usually uneventful. She does occasionally change her mind and decide not to leave the car, but that is okay. The agenda is usually hers.
Her physical health has improved from opportunities to walk each day. Her stamina and endurance has increased dramatically from all the walking she does, at parks, at zoos, at malls, and everywhere she goes.
Support staff have learned how to better support Valerie on her computer and with communication devices.
I have figured out what to include in the budget after this first year of expenses to look at. It helps to know what has been successful and what has not been successful after a year of experience.
So, now, at the start of our second year, I am still busy with my management of this program. I have been on the phone, scheduling interviews for new staff to replace one that is moving away and scheduling the evaluation by the prospective OT. When the new staff are hired I will need to train them and supervise closely while they get the hang of things. I am scheduling the dental cleaning for this month at the hospital and the prerequisite doctor appointment in advance to clear her for anesthesia. I am still filling out time sheets and mileage reimbursement forms every two weeks, and vendor reimbursement forms for all the people who support V and her staff. I still email and call to coordinate schedules for all these services. But I see how well and how happy my daughter is and every minute of effort is worth it.
I am still a fan of New Directions at the end of our first year. I am still learning how to do things more efficiently so that it takes less time for me. I would say that this has been the happiest year of V's life and I expect that it will only get better for her.
We were fortunate to be fully staffed for personal support staff from the beginning of ND. We were lucky to have a special educator to continue with us from school into the adult program.
What I needed to find, as a support broker was a speech therapist. One of the bigger goals I had for V was to reduce her frustration by increasing her ability to express herself. We now have a great Speech Therapist coming once a week for an hour and I see it making a difference. V is using a Tech/Speak device in a purposeful way to ask for things she wants to do. In some cases we have switched from generic symbols to digital photographs in our picture symbols in hopes that V will understand them better. Currently we are using a mix of both.
I also needed to find an Occupational Therapist. Impaired motor skills continue to limit V's ability to perform basic skills and she deserves the support of someone who can help her continue to improve her function and independence. I had an evaluation a few months ago for an OT, but it didn't work out to even get started. This week there is an eval scheduled with another OT and I am hopeful that this one will agree to work with V. The obstacle has been the desire to have services provided in the natural environment instead of in an office. Doing this will eliminate the need for V to transfer skills from an office to her everyday life. Now that Special Olympics cycling is beginning, I can really use the help of an OT to assist me in how to teach the pedaling, steering and braking skills V needs to acquire. Progress in performing tasks has been lacking this first year because of a lack of an OT to help us.
About half way through the year, I found someone to do adapted aquatics instruction who was wonderful, but now has been promoted at her full time job and is trying to help us find a replacement. In the meantime, we are without an instructor once again. I saw V working on floating, kicking, blowing bubbles in the water and learning to use the slide at the pool. She also helped V to learn to use the stationary bike when she wasn't in the mood for the pool.
We have made great progress in therapeutic horseback riding in this first year. We went from minimal participation on V's part to riding a full 30 minutes and asking for more each time. We learned that it was important to make the caregivers a part of the lesson so that she felt safe enough to remain on the horse.
V has learned to enjoy her community on a daily basis this year. She can use the library to choose videotapes or look at magazines, and seems to choose this outing each Monday morning, creating her own routine.
She can enjoy the experience of eating in a restaurant and has increased her ability to sit and wait for her food. We are using photos to give her greater choice about where to go and what to order.
She transitions much better than she did a year ago. For many years she would not leave the house without me, but now she happily gets in the car and goes with her caregivers. She can go to 2 or 3 locations each day, in and out of the car and the transition between the car and these locations is usually uneventful. She does occasionally change her mind and decide not to leave the car, but that is okay. The agenda is usually hers.
Her physical health has improved from opportunities to walk each day. Her stamina and endurance has increased dramatically from all the walking she does, at parks, at zoos, at malls, and everywhere she goes.
Support staff have learned how to better support Valerie on her computer and with communication devices.
I have figured out what to include in the budget after this first year of expenses to look at. It helps to know what has been successful and what has not been successful after a year of experience.
So, now, at the start of our second year, I am still busy with my management of this program. I have been on the phone, scheduling interviews for new staff to replace one that is moving away and scheduling the evaluation by the prospective OT. When the new staff are hired I will need to train them and supervise closely while they get the hang of things. I am scheduling the dental cleaning for this month at the hospital and the prerequisite doctor appointment in advance to clear her for anesthesia. I am still filling out time sheets and mileage reimbursement forms every two weeks, and vendor reimbursement forms for all the people who support V and her staff. I still email and call to coordinate schedules for all these services. But I see how well and how happy my daughter is and every minute of effort is worth it.
I am still a fan of New Directions at the end of our first year. I am still learning how to do things more efficiently so that it takes less time for me. I would say that this has been the happiest year of V's life and I expect that it will only get better for her.
Sunday, July 5, 2009
Update on Special Olympics cycling
We attended the first practice session of the season. It was out of V's routine to go out on a Saturday morning, but we managed. It was a beautiful morning at Bohrer Park. The coach was there waiting with the trike and V put on her helmet and got right on, ready to go.
Then, the coach said, "This seat is too high for her. Let me just have her get off and I'll raise it." So, she was cooperative about getting off and the coach went to work on the trike. V took my hand and walked me all around the parking lot and down the path a ways. We sat at the picnic table and then up again for more walking. Soon, she was looking for the car. By the time the coach had finished adjusting the seat, 35 minutes had passed and V had lost interest, was bored and ready to get in the car and go. I tried to coax her back onto the trike but had no success. She was insistent about leaving and began to get agitated when she was no permitted to get right into the car and leave. She was clearly done, without really getting started and we had to let it go for that day.
We thanked the coach and told him that it was a no-go for the day, but we would be back to try again.
This week I began to really look at trikes for her. The most basic trike starts at $400.00 and looks just like a child's trike. I noticed that the other Special Olympics participants had a different kind of trike that was longer, lower to the ground and had recumbent seats with back supports. They seem less tippy with the lower center of gravity, and a shorter distance to fall if you do tip. They are aluminum and lighter weight, as compared to the basic trike which is steel and about 45 lbs. But these recumbent trikes cost more than 1K to buy. I would be willing to spend the money if I knew that she would eventually get the hang of cycling if we are as persistent as we were the the horseback riding. Do we start out with the cheap trike and upgrade later if it works out, or do we start out with the better trike and sell it if the cycling doesn't work out? I am checking Craig's list, Ebay, and every other internet source of used bikes that I can to see if I could get a better bike for less than the cost of new.
There was no practice this week because of the holiday, but it resumes next week. Will we have found a satisfactory bike by then. Will I borrow my husband's pickup to transport it, or will we spend even more for a rack to accomodate a trike? Will V even get on next week. She was interested enough to sit on 3 different kinds of trikes at the Mt. Airey bike store we took her to on Friday. I couldn't really tell if she had a preference for one kind over another. I could see that she needs LOTS of support to just understand the concept of pedaling. Wish I had an OT on board to help us with this, but I am still looking for someone who will work outside of an office with V. We will have a long way to go to get the hang of this.
Then, the coach said, "This seat is too high for her. Let me just have her get off and I'll raise it." So, she was cooperative about getting off and the coach went to work on the trike. V took my hand and walked me all around the parking lot and down the path a ways. We sat at the picnic table and then up again for more walking. Soon, she was looking for the car. By the time the coach had finished adjusting the seat, 35 minutes had passed and V had lost interest, was bored and ready to get in the car and go. I tried to coax her back onto the trike but had no success. She was insistent about leaving and began to get agitated when she was no permitted to get right into the car and leave. She was clearly done, without really getting started and we had to let it go for that day.
We thanked the coach and told him that it was a no-go for the day, but we would be back to try again.
This week I began to really look at trikes for her. The most basic trike starts at $400.00 and looks just like a child's trike. I noticed that the other Special Olympics participants had a different kind of trike that was longer, lower to the ground and had recumbent seats with back supports. They seem less tippy with the lower center of gravity, and a shorter distance to fall if you do tip. They are aluminum and lighter weight, as compared to the basic trike which is steel and about 45 lbs. But these recumbent trikes cost more than 1K to buy. I would be willing to spend the money if I knew that she would eventually get the hang of cycling if we are as persistent as we were the the horseback riding. Do we start out with the cheap trike and upgrade later if it works out, or do we start out with the better trike and sell it if the cycling doesn't work out? I am checking Craig's list, Ebay, and every other internet source of used bikes that I can to see if I could get a better bike for less than the cost of new.
There was no practice this week because of the holiday, but it resumes next week. Will we have found a satisfactory bike by then. Will I borrow my husband's pickup to transport it, or will we spend even more for a rack to accomodate a trike? Will V even get on next week. She was interested enough to sit on 3 different kinds of trikes at the Mt. Airey bike store we took her to on Friday. I couldn't really tell if she had a preference for one kind over another. I could see that she needs LOTS of support to just understand the concept of pedaling. Wish I had an OT on board to help us with this, but I am still looking for someone who will work outside of an office with V. We will have a long way to go to get the hang of this.
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