In Montgomery County, MD, there is an organization that began in 1994, and now serves hundreds of teens and adults with developmental differences. Programs that PCR offers include basketball, chorus, basic communication skills, music therapy, art, photography, Tai Ji (martial arts), and a Friday night social club. They have a Mens's Group and a Women's Group that meets in a local church and they have special events like Earth Day activities. In addition, they offer a Sunday afternoon respite program with many fun and therapeutic activities, once a month.
PCR sends out a periodic newsletter, has a website and is on Facebook. If you are in the Washington D.C. metropolitan area and think you might be interested in looking into PCR activities, the Spring sessions end in July, so there is time to register for the next sessions.
To read more about PCR or to register for these programs, copy and paste this URL
http://www.pcr-inc.org
Showing posts with label respite care. Show all posts
Showing posts with label respite care. Show all posts
Thursday, June 9, 2011
Wednesday, April 22, 2009
Respite Care or Intensive Support Services in the Home
To any parent who is beginning to receive in-home support services for a disabled child I would say this. First, think about what the person who will be providing help to your child will be doing and think about how you want it to be done.
An agency who sends staff to your home is not likely to give you any guidance about working with staff for your child. Realize that the way things were done at the last place this person worked may not be the same way that you want things done in your home. Some people want to receive lots of detailed guidance from you and some want to be left to use their own judgment. Whether or not the person is a good fit for you and your child depends on the match between how much input you want to have and how much the staff person is comfortable taking.
If you are very involved and like to micro-manage your child's care then you won't work well with someone who doesn't like too much input from a parent. If you are just getting started and don't really feel comfortable telling someone how to do their job, then you won't work well with someone who wants to be told how to do everything.
The reality is that if you don't know what you want and how you want it from support staff, you are not likely to get it. The more that you can think things through and put your expectations in writing, the more clear your expectations will be to anyone who is supporting your child.
Think also about what kind of feedback you want from support staff. If all of your communication is verbal, then you are likely to think of questions after your staff have left and may be out of reach. If you can anticipate your most likely questions, then provide a written form where staff can answer those questions before they leave.
These are things that I learned between the time I began to receive help in 1997 and now. Many of my written guidelines for support staff came about because of things that went wrong. My Daily Report form is the result of questions that I inevitably had for staff after they had already left. Written guidelines regarding transportation of my daughter were developed about 6 months after staff began driving my daughter in our family vehicle. Then I had to think about things like what I would want them to do if there was a mechanical problem and they broke down or were in an accident. After finding the tank on empty in the driveway in the winter, I had to educate staff about maintaining fuel at no less than a half tank to avoid the danger of running out fuel while driving V, and the danger of freezing condensation in the fuel line.
It is time consuming to interview and train someone to come to your home and work with your child, and clear communication and expectations from the beginning minimize the chance of misunderstanding and disappointment later that may require an inconvenient transition to someone new for you and your child.
An agency who sends staff to your home is not likely to give you any guidance about working with staff for your child. Realize that the way things were done at the last place this person worked may not be the same way that you want things done in your home. Some people want to receive lots of detailed guidance from you and some want to be left to use their own judgment. Whether or not the person is a good fit for you and your child depends on the match between how much input you want to have and how much the staff person is comfortable taking.
If you are very involved and like to micro-manage your child's care then you won't work well with someone who doesn't like too much input from a parent. If you are just getting started and don't really feel comfortable telling someone how to do their job, then you won't work well with someone who wants to be told how to do everything.
The reality is that if you don't know what you want and how you want it from support staff, you are not likely to get it. The more that you can think things through and put your expectations in writing, the more clear your expectations will be to anyone who is supporting your child.
Think also about what kind of feedback you want from support staff. If all of your communication is verbal, then you are likely to think of questions after your staff have left and may be out of reach. If you can anticipate your most likely questions, then provide a written form where staff can answer those questions before they leave.
These are things that I learned between the time I began to receive help in 1997 and now. Many of my written guidelines for support staff came about because of things that went wrong. My Daily Report form is the result of questions that I inevitably had for staff after they had already left. Written guidelines regarding transportation of my daughter were developed about 6 months after staff began driving my daughter in our family vehicle. Then I had to think about things like what I would want them to do if there was a mechanical problem and they broke down or were in an accident. After finding the tank on empty in the driveway in the winter, I had to educate staff about maintaining fuel at no less than a half tank to avoid the danger of running out fuel while driving V, and the danger of freezing condensation in the fuel line.
It is time consuming to interview and train someone to come to your home and work with your child, and clear communication and expectations from the beginning minimize the chance of misunderstanding and disappointment later that may require an inconvenient transition to someone new for you and your child.
Monday, April 20, 2009
Kennedy Krieger and the NBU
I had no idea when I drove to Baltimore to admit V to the NBU, that she would not return home for another 6 months. I probably would have turned around if I had known.
First, the Broadway Campus of KKI is in a dismal part of Baltimore, just next to Johns Hopkins, and V was only permitted to leave the building for 4 hours at a time during her stay. I live at least an hour drive from there, so I felt it would be too difficult for us both, emotionally, to come home for 2 hours and then return her to her temporary residence.
On the NBU there is a team approach to diagnose and treat aggressive, destructive and self-injurious behaviors in patients who have developmental disabilities. V was 10 years old when she was admitted. She was given a bed in a room with 2 other patients on the unit. There were other bedrooms, 2 common areas, a time out room, a medical room for the nurses to check patients and administer meds, and an observation room.
V was allowed to take her depakote for seizures, but any other behavior related meds were immediately discontinued and a period of "baseline" assessment began. As medical doctors, psychiatrists, behavioral psychologists, special education teachers, speech therapists, occupational therapists and nurses began a global evaluation of the possible causes for the maladaptive behaviors, a technician counted each behavior with a clicker, every moment the patient was awake. The technician would respond verbally to each behavior as they imagined a parent or teacher might do in the natural environment. "Stop.", "Don't do that.", was heard over and over by every technician assigned to a patient on the unit. The behavior data was collected and analyzed by the psychologist for patterns to identify the motivation and reinforcement of the the behavior. A protocol was designed by the psychologist to be tried out by the technician while the patient's response was monitored and recorded. Meanwhile a teacher and therapists continued to work with the patient, as if they were in school, and also to implement the protocol as they interacted with the patient. When the baseline period was over, the psychiatrist tried new medications, while effects, both positive and negative, were observed and documented. When the protocol was deemed complete, then it was time to bring the parents in for training on how to implement the protocol. For me this involved having to practice the protocol on V while being videotaped, several times on different occasions before she would be released back into my full time care.
This description of how the NBU works is a very quick and dirty overview of what happens. Spending time on the NBU, visiting your child, can at times be like a level of hell in Dante's Inferno. Remember, all the patients on the unit are there because of severe behavior issues that could not be resolved with less intensive interventions, and there were times that one patient could set off the others.
I spent the first couple of days on the unit with V, sleeping at the Ronald McDonald house that first night. When I went back to work, I traveled each evening to Baltimore, arriving around dinner time and stayed until V was sleeping in her bed. It was really important to me that V never feel abandoned in a strange place away from home and all of her familiar routines, so I bathed her each evening, put on her pajamas, brushed her hair and read to her until she fell asleep each night. I did this 4 days a week, and one day on the weekend, while her father or my mother came to see her on the 2 days a week that I did not. When the weather wasn't too bad, we went to Fells Point to walk and take rides on the water taxis over to the Inner Harbor. The time I spent on the NBU was difficult, but the things I saw there put some perspective on my own challenges. One little girl on the unit had scratched at her eyes until she blinded herself. Another little boy had a degenerative disease, and his father, who was a professional football player, traveled a much greater distance than I had to in order to visit his son, who was only going to get worse rather than better.
When V was asleep in her bed, I drove home from the NBU, at times drained and discouraged. For those 6 months, my whole life was work and the NBU, nothing else. So, when self pity got hold and started the spiral of negative thoughts, I told myself,"STOP!" Then I would start to count my blessings. The list of things in life to be thankful for and happy about was always so much longer the list of troubles, that I regained my strength each time. Sometimes the list held such simple things as the feel of warm laundry in my arms, fresh from the dryer on a really cold day. It may be reaching, but this habit has kept me going time and again.
I spent so much time on the NBU, that I befriended some of the nurses and went out with them a couple of times, socially. Most parents do not spend time visiting like I did, and that is not a judgement of them. But I remember one little girl who slept in the bed next to V. One night as I read to V at bedtime, the little girl started to cry. I asked her what was wrong and she said, "I wish my mother would come and see me like you do." Some families lived far away. People come to KKI from all over the world. Some patients came from group homes or institutions and had no family to visit them.
One of the best things that happened on the NBU was the night I overheard a parent talking to a technician about respite care. I didn't know anything about it and had never received any kind of support in my care of V from local agencies, but I was determined to find out more.
V had entered the NBU on New Years Eve and it was June before she was deemed ready to come home. The length of her stay was highly unusual, but the team felt she had been an exceptional challenge. Her protocol was elaborate and the prospect of implementing it in our home, alone, was overwhelming. One service that KKI provided was follow up by an out-patient behavior analyst who provided training and support at V's school for her teacher and aide. Everyone who spent time with V was supposed to be trained and on board to be consistent with the protocol.
I knew that I would need help. I made some calls and learned about a state initiative referred to as Return/Divert. The idea was to provide wrap around supports to families in order to keep children at home who were at risk of becoming institutionalized. The resource that I turned to for this help was the Collaboration Council of Montgomery County and I have posted a link to the website for this organization for your assistance. I arranged for the school system to refer V for consideration of these services and she was approved.
This was the beginning of respite care in our home for V, funded by state and county funds. It was what made it possible for V to remain in my home and in a local school, while I worked to support us.
First, the Broadway Campus of KKI is in a dismal part of Baltimore, just next to Johns Hopkins, and V was only permitted to leave the building for 4 hours at a time during her stay. I live at least an hour drive from there, so I felt it would be too difficult for us both, emotionally, to come home for 2 hours and then return her to her temporary residence.
On the NBU there is a team approach to diagnose and treat aggressive, destructive and self-injurious behaviors in patients who have developmental disabilities. V was 10 years old when she was admitted. She was given a bed in a room with 2 other patients on the unit. There were other bedrooms, 2 common areas, a time out room, a medical room for the nurses to check patients and administer meds, and an observation room.
V was allowed to take her depakote for seizures, but any other behavior related meds were immediately discontinued and a period of "baseline" assessment began. As medical doctors, psychiatrists, behavioral psychologists, special education teachers, speech therapists, occupational therapists and nurses began a global evaluation of the possible causes for the maladaptive behaviors, a technician counted each behavior with a clicker, every moment the patient was awake. The technician would respond verbally to each behavior as they imagined a parent or teacher might do in the natural environment. "Stop.", "Don't do that.", was heard over and over by every technician assigned to a patient on the unit. The behavior data was collected and analyzed by the psychologist for patterns to identify the motivation and reinforcement of the the behavior. A protocol was designed by the psychologist to be tried out by the technician while the patient's response was monitored and recorded. Meanwhile a teacher and therapists continued to work with the patient, as if they were in school, and also to implement the protocol as they interacted with the patient. When the baseline period was over, the psychiatrist tried new medications, while effects, both positive and negative, were observed and documented. When the protocol was deemed complete, then it was time to bring the parents in for training on how to implement the protocol. For me this involved having to practice the protocol on V while being videotaped, several times on different occasions before she would be released back into my full time care.
This description of how the NBU works is a very quick and dirty overview of what happens. Spending time on the NBU, visiting your child, can at times be like a level of hell in Dante's Inferno. Remember, all the patients on the unit are there because of severe behavior issues that could not be resolved with less intensive interventions, and there were times that one patient could set off the others.
I spent the first couple of days on the unit with V, sleeping at the Ronald McDonald house that first night. When I went back to work, I traveled each evening to Baltimore, arriving around dinner time and stayed until V was sleeping in her bed. It was really important to me that V never feel abandoned in a strange place away from home and all of her familiar routines, so I bathed her each evening, put on her pajamas, brushed her hair and read to her until she fell asleep each night. I did this 4 days a week, and one day on the weekend, while her father or my mother came to see her on the 2 days a week that I did not. When the weather wasn't too bad, we went to Fells Point to walk and take rides on the water taxis over to the Inner Harbor. The time I spent on the NBU was difficult, but the things I saw there put some perspective on my own challenges. One little girl on the unit had scratched at her eyes until she blinded herself. Another little boy had a degenerative disease, and his father, who was a professional football player, traveled a much greater distance than I had to in order to visit his son, who was only going to get worse rather than better.
When V was asleep in her bed, I drove home from the NBU, at times drained and discouraged. For those 6 months, my whole life was work and the NBU, nothing else. So, when self pity got hold and started the spiral of negative thoughts, I told myself,"STOP!" Then I would start to count my blessings. The list of things in life to be thankful for and happy about was always so much longer the list of troubles, that I regained my strength each time. Sometimes the list held such simple things as the feel of warm laundry in my arms, fresh from the dryer on a really cold day. It may be reaching, but this habit has kept me going time and again.
I spent so much time on the NBU, that I befriended some of the nurses and went out with them a couple of times, socially. Most parents do not spend time visiting like I did, and that is not a judgement of them. But I remember one little girl who slept in the bed next to V. One night as I read to V at bedtime, the little girl started to cry. I asked her what was wrong and she said, "I wish my mother would come and see me like you do." Some families lived far away. People come to KKI from all over the world. Some patients came from group homes or institutions and had no family to visit them.
One of the best things that happened on the NBU was the night I overheard a parent talking to a technician about respite care. I didn't know anything about it and had never received any kind of support in my care of V from local agencies, but I was determined to find out more.
V had entered the NBU on New Years Eve and it was June before she was deemed ready to come home. The length of her stay was highly unusual, but the team felt she had been an exceptional challenge. Her protocol was elaborate and the prospect of implementing it in our home, alone, was overwhelming. One service that KKI provided was follow up by an out-patient behavior analyst who provided training and support at V's school for her teacher and aide. Everyone who spent time with V was supposed to be trained and on board to be consistent with the protocol.
I knew that I would need help. I made some calls and learned about a state initiative referred to as Return/Divert. The idea was to provide wrap around supports to families in order to keep children at home who were at risk of becoming institutionalized. The resource that I turned to for this help was the Collaboration Council of Montgomery County and I have posted a link to the website for this organization for your assistance. I arranged for the school system to refer V for consideration of these services and she was approved.
This was the beginning of respite care in our home for V, funded by state and county funds. It was what made it possible for V to remain in my home and in a local school, while I worked to support us.
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