Rumors were floating among parents I know. I heard that no new applications for New Directions Waiver services are being accepted at this time. I wondered if the New Directions program was at risk. So, I wrote an email to my resource coordinator, Lauretta Reffell, to ask for the scoop.
New Directions is not in danger of going away, she says. This waiver has a limited number of slots and they are all currently full, so no new applications are being accepted at this time. Those families or individuals who are currently served by the Community Pathways model must remain in that situation, even if they are not satisfied with their services, until clients leave New Directions and create openings or until DDA decides to increase the number of slots for the waiver.
Why does New Directions have a limited number of slots? I don't know the answer to that question. It could be that new applications require a lot of support from DDA staff to get the plan of care and budget set up. Many of these documents take months to create and involve many revisions until they are just right. With state budgets so stretched, I am sure that DDA can't hire any additional staff to carry the weight of such time-consuming clients. It could be that the state doesn't want to take too much business away from established agencies that currently provide services to clients with less direct DDA support and hand-holding. I am guessing. If I get an answer to the question from DDA, I will post it.
I would like to see this option expand and be available to anyone who wants it. For that to happen, DDA would need to contract out the supports required to set up the plan of care and budget, and have the applicant pay for the cost from their annual budget, rather than hire permanent DDA employees to support each applicant. That could keep the cost down to the state and the work load down for the DDA staff. What about the loss of clients to established agencies? I hope that at some point, New Directions clients will have the option of purchasing just the services that they want and need from established agencies out of their New Directions budgets, which would be something of a crossover between Community Pathways and New Directions Waivers. So far, I don't know of any established agencies that are open to this kind of arrangement. I asked CSAAC director, Ian Paragol, about this possibility by phone 2 years ago, and he said he would look into it, but never got back to me or responded to letters asking what he was able to find out.
If self direction is what you want, then you will need to let DDA know that you would like to see the number of slots for the New Directions Waiver increased, or it may not be an option when you want it.
If you are not in Maryland and your state does not have anything similar to this, click on the Maryland DDA link and go to New Directions Waiver. Send the program description to your state agency for disability services and ask for this option. Get other individuals and families you know to sign the request. The self directed option is GREAT and everyone should have it if they want it!
Tuesday, January 12, 2010
Friday, January 8, 2010
Exciting New Year
V is 1.5 years into her New Directions Waiver services and I have finally been successful in adding an occupational therapist to the support team who has experience with the population of clients with developmental disabilities. Nyle MacFarlane of Blue Nyle Therapy Services is beginning one hour a week with V at our home, for now. She hopes that V can eventually access the clinic where the sensory equipment is available. Transitions, being what they are for V, will make this a future goal, after a positive relationship between V and therapist has been established.
This week we also have a veteran special education teacher joining the support team,who will also visit one hour a week to help V increase her knowledge and skills.
The only piece of our plan lacking is a replacement for the adapted aquatics instructor that we lost in July. I am still working on that, but remain hopeful.
The new staff additions have meant that this has been a busy week for me, with meetings and paperwork, faxes, phone calls and emails. This is standard when there is any change in the team.
I am excited and also anxious. I see possibility for growth for V, but know that it will be an adjustment to have 2 additional days a week to work with 2 new people and I wonder how she will respond. I hope she will like it. She is so lucky to have such qualified supports. She is getting more services now than when she was in school!
As I posted before, it has been really difficult to fill these positions. I first met with Nyle more than a year ago. Her schedule was too packed to fit V in at the time, but every couple of months I shot her an email, touching base, asking if her schedule had any new slots or if she knew anyone who might be qualified and interested in the position. Finally, the answer was yes. For the teacher, I emailed someone who works as an assistant in a nearby special education center and asked if they knew anyone who might be interested in working with V. The response came the same day and that arrangement was confirmed within 2 days.
So, as difficult as it can be to fill positions with good people, over all I have had more success by asking people I know for references than by advertising.
If you need staff, look up your local special education centers, fax or email what you need to the main office, human resources or directly to staff emails that are often listed on the website of the organization. Ask them to post your need on a staff lounge bulletin board or to share it with anyone who might be good in the position. Secretaries and human resource people are often sympathetic and happy to share your request with staff. I found two of my personal support staff in this manner, and they brought on the other staff from people that they knew who have similar qualifications.
This week we also have a veteran special education teacher joining the support team,who will also visit one hour a week to help V increase her knowledge and skills.
The only piece of our plan lacking is a replacement for the adapted aquatics instructor that we lost in July. I am still working on that, but remain hopeful.
The new staff additions have meant that this has been a busy week for me, with meetings and paperwork, faxes, phone calls and emails. This is standard when there is any change in the team.
I am excited and also anxious. I see possibility for growth for V, but know that it will be an adjustment to have 2 additional days a week to work with 2 new people and I wonder how she will respond. I hope she will like it. She is so lucky to have such qualified supports. She is getting more services now than when she was in school!
As I posted before, it has been really difficult to fill these positions. I first met with Nyle more than a year ago. Her schedule was too packed to fit V in at the time, but every couple of months I shot her an email, touching base, asking if her schedule had any new slots or if she knew anyone who might be qualified and interested in the position. Finally, the answer was yes. For the teacher, I emailed someone who works as an assistant in a nearby special education center and asked if they knew anyone who might be interested in working with V. The response came the same day and that arrangement was confirmed within 2 days.
So, as difficult as it can be to fill positions with good people, over all I have had more success by asking people I know for references than by advertising.
If you need staff, look up your local special education centers, fax or email what you need to the main office, human resources or directly to staff emails that are often listed on the website of the organization. Ask them to post your need on a staff lounge bulletin board or to share it with anyone who might be good in the position. Secretaries and human resource people are often sympathetic and happy to share your request with staff. I found two of my personal support staff in this manner, and they brought on the other staff from people that they knew who have similar qualifications.
Tuesday, January 5, 2010
The Winter Doldrums
It is cold outside! The high temps all week will be in the low 30's. V doesn't like these frosty days and neither do her support staff. The zoos that she enjoys so much are closed for the season. The horseback riding lessons get cancelled often because it is too cold or because V does not like riding indoors on rainy days. No one is interested in walking in the parks in the frigid weather.
As I documented mileage for reimbursement, I noticed a lot of trips to the mall for community outings. The mall is a nice warm place to walk and get some exercise and there is certainly a lot to look at and eat there. However, I was thinking that too many trips to the mall between now and the warmer temps of Spring could get stale and boring. Of course we still have the Indoor swim center, the library, the bowling alley, the movie theater and various restaurants, but what else can we do?
We live in the suburbs and there are lots of businesses that can help V learn more about the community that she lives in and how things work. Time to get a little creative.
Where could V go, close to home, where she hasn't been before? Something new and interesting.
I began pulling up online photos of florists. There is one close to our home. I printed out directions to it for support staff. I pulled up photos of floral arrangements for various occasions; birthdays, weddings, funerals, new baby, and get well. I printed them out and cut them up. The next morning I helped the support staff do a gluing activity with V, using the florist pictures, as we talked about what the different flower arrangements were for, and what a florist does. Afterward, I asked V, "Do you want to go see the flowers at the florist?" She responded, "Yeah." So, a while later, off she went with her staff, to the florist. I wondered all day how the outing would go. V came home with an african violet that she purchased at the florist. Her staff reported that she was very interested in the flowers, the posters on the wall, and the ribbons the florist used. It was a successful outing and now V knows what a florist shop is. The staff said that they tried to go to the post office with her, but it was crowded and she got upset there. Well, I suggested that some preparation before visiting a new destination would be helpful next time, the way we prepared for the florist in advance.
I spoke with the staff about other possible community destinations that might be interesting; maybe a bakery, maybe the dry cleaners, the pharmacy, NTW or an automotive supply store, or Krispy Kreme to watch the donuts get made. Perhaps a local dance studio would let her watch a class. Perhaps a visit to see a fire truck could be arranged. There a lots of interesting places in D.C. or Baltimore to visit, but parking close enough to those attractions is a problem in those places.
I think, with some imagination and preparation, we could make this winter interesting instead of routine and introduce some new experiences. As always, ideas are welcome from readers.
As I documented mileage for reimbursement, I noticed a lot of trips to the mall for community outings. The mall is a nice warm place to walk and get some exercise and there is certainly a lot to look at and eat there. However, I was thinking that too many trips to the mall between now and the warmer temps of Spring could get stale and boring. Of course we still have the Indoor swim center, the library, the bowling alley, the movie theater and various restaurants, but what else can we do?
We live in the suburbs and there are lots of businesses that can help V learn more about the community that she lives in and how things work. Time to get a little creative.
Where could V go, close to home, where she hasn't been before? Something new and interesting.
I began pulling up online photos of florists. There is one close to our home. I printed out directions to it for support staff. I pulled up photos of floral arrangements for various occasions; birthdays, weddings, funerals, new baby, and get well. I printed them out and cut them up. The next morning I helped the support staff do a gluing activity with V, using the florist pictures, as we talked about what the different flower arrangements were for, and what a florist does. Afterward, I asked V, "Do you want to go see the flowers at the florist?" She responded, "Yeah." So, a while later, off she went with her staff, to the florist. I wondered all day how the outing would go. V came home with an african violet that she purchased at the florist. Her staff reported that she was very interested in the flowers, the posters on the wall, and the ribbons the florist used. It was a successful outing and now V knows what a florist shop is. The staff said that they tried to go to the post office with her, but it was crowded and she got upset there. Well, I suggested that some preparation before visiting a new destination would be helpful next time, the way we prepared for the florist in advance.
I spoke with the staff about other possible community destinations that might be interesting; maybe a bakery, maybe the dry cleaners, the pharmacy, NTW or an automotive supply store, or Krispy Kreme to watch the donuts get made. Perhaps a local dance studio would let her watch a class. Perhaps a visit to see a fire truck could be arranged. There a lots of interesting places in D.C. or Baltimore to visit, but parking close enough to those attractions is a problem in those places.
I think, with some imagination and preparation, we could make this winter interesting instead of routine and introduce some new experiences. As always, ideas are welcome from readers.
Tuesday, December 29, 2009
What Is Your True Budget and When Will You Find Out?
Believe it or not, it took me from October of 2007 until December of 2009 to find out the answer to that question.
Let's say that a person is entering their final year of school and will be transitioning into adult services within the year. A phone call comes from someone contracted by the state to interview you about the needs of that individual. Based on that interview and documentation from school and doctors or specialists, 2 numbers are assigned to the individual between 0 and 5. A 5 and 5 indicate the highest level of need, lower numbers indicate lower levels of needed support. A dollar amount will be determined based on these numbers for your "budget" with which to plan for adult services under the New Directions Waiver.
You will receive a phone call, followed by a letter, informing you of this dollar amount. You will be told that if there is money remaining at the end of the year, it will not carry over into the next year, but will go into an emergency fund for other families, but will reset at the original amount at the beginning of the next fiscal year. This is true, but not true. This amount is NOT your true budget and it is not the amount that will reset at the beginning of each new fiscal year, as I believed it would.
Next, you begin the process of completing a plan of care and budget document. These documents show how the money will be spent within state guidelines and restrictions, and why these expenditures are necessary. You can request expenditures up to the dollar amount in your letter. If you request less that that amount, you will lose the difference, permanently. You must submit the Plan of Care and Budget document to DDA for approval. It make take considerable time to get your approval and you may be asked to submit many revisions to these documents before you receive approval. When, at last, you receive the approval by the state for the budget and plan of care for the first year in the waiver, the amount of THAT budget is your true budget. You may not go back and request any unused funds from your original budget letter at the beginning of the next fiscal year.
It is not clear to me why the second budget approval carries more weight than the original budget letter from the state. I thought that the original letter represented the true budget and didn't worry about requesting less than the full amount, believing that it would be available again the next year if V needed it. The second year I requested more of the original amount than the first year, but still less than the full amount, and received approval at 3 levels of DDA. Then, six months later was informed that the approval was in error and that I had to give the approved money back, as I was over budget. I have requested an explanation as to why the lowest of the 3 approved budgets is the only one that is "correct", but have not received any explanation. If I had been informed by anyone during the process of creating the first Plan of Care and Budget documents, that any unrequested funds would be lost forever, then I would have requested all of it. Too late now.
If you are going through the process of creating those first year documents, I hope that you read this and benefit from my experience in this matter.
Let's say that a person is entering their final year of school and will be transitioning into adult services within the year. A phone call comes from someone contracted by the state to interview you about the needs of that individual. Based on that interview and documentation from school and doctors or specialists, 2 numbers are assigned to the individual between 0 and 5. A 5 and 5 indicate the highest level of need, lower numbers indicate lower levels of needed support. A dollar amount will be determined based on these numbers for your "budget" with which to plan for adult services under the New Directions Waiver.
You will receive a phone call, followed by a letter, informing you of this dollar amount. You will be told that if there is money remaining at the end of the year, it will not carry over into the next year, but will go into an emergency fund for other families, but will reset at the original amount at the beginning of the next fiscal year. This is true, but not true. This amount is NOT your true budget and it is not the amount that will reset at the beginning of each new fiscal year, as I believed it would.
Next, you begin the process of completing a plan of care and budget document. These documents show how the money will be spent within state guidelines and restrictions, and why these expenditures are necessary. You can request expenditures up to the dollar amount in your letter. If you request less that that amount, you will lose the difference, permanently. You must submit the Plan of Care and Budget document to DDA for approval. It make take considerable time to get your approval and you may be asked to submit many revisions to these documents before you receive approval. When, at last, you receive the approval by the state for the budget and plan of care for the first year in the waiver, the amount of THAT budget is your true budget. You may not go back and request any unused funds from your original budget letter at the beginning of the next fiscal year.
It is not clear to me why the second budget approval carries more weight than the original budget letter from the state. I thought that the original letter represented the true budget and didn't worry about requesting less than the full amount, believing that it would be available again the next year if V needed it. The second year I requested more of the original amount than the first year, but still less than the full amount, and received approval at 3 levels of DDA. Then, six months later was informed that the approval was in error and that I had to give the approved money back, as I was over budget. I have requested an explanation as to why the lowest of the 3 approved budgets is the only one that is "correct", but have not received any explanation. If I had been informed by anyone during the process of creating the first Plan of Care and Budget documents, that any unrequested funds would be lost forever, then I would have requested all of it. Too late now.
If you are going through the process of creating those first year documents, I hope that you read this and benefit from my experience in this matter.
Tuesday, November 24, 2009
Thankful at Thanksgiving
On a bad day, it is easy to get hung up on the little things that don't work as well as I would like. I have to keep reminding myself that in the Big Picture, this adult program is working fabulously.
The supervising nurse visited on Saturday. She said V's blood pressure was 110/60. When the dental cleaning was done under general anesthesia 3 months ago, the nurse commented on how fast V's blood oxygen returned to normal. She was impressed. I see V's clothes fitting more loosely now than 6 months ago, in a good way, and I know that all of these things are the result of all the exercise that V is getting each day when she goes into the community. I see that she has a great appetite, and sleeps through the night. I see that she is smiling so much more now than a year ago and seems so much more peaceful. What more can a parent want than health and happiness for their child. I am thankful this week for the ability to see that V is well-fed with nutritious home-cooked food, well-cared for by dentists, nurses, therapists, doctors and support staff, and well-loved by her family. The behavior analyst commented on the dramatic improvement in V's quality of life over the past year during her most recent visit. V's support staff who have worked with her for the past 4 years commented recently on how much calmer and happier V is now than when she was in school. Ironically, I see more progress in skills and cooperation with therapists now than was ever reported within the structure of school.
Why is this the case? Why can our speech therapist get one hour of cooperative work with V now, when V would rarely work more than 15 minutes with a speech therapist at school? Is it because the work is now done in V's home and in the community? Is it because the current therapist has discovered what re-inforcers work or what activities V enjoys doing during sessions or just a good personality match? I don't know. Maybe the success is the result of all of these things working together.
What we know now, for sure, is that engaging in a power struggle with V does not work, but patience does. Demands do not work, but negotiation does. A rigid schedule does not work, but having flexibility does work. Pro-active anticipation of problems can prevent a lot of wasted time later spent resolving problems. When V is calm and happy, she learns and retains her knowledge and is able to show what she knows.
We have come a long way, but there is still lots of room for growth. I am thankful for the opportunity to be in the front row to witness these changes for the better and to be a part of them.
The supervising nurse visited on Saturday. She said V's blood pressure was 110/60. When the dental cleaning was done under general anesthesia 3 months ago, the nurse commented on how fast V's blood oxygen returned to normal. She was impressed. I see V's clothes fitting more loosely now than 6 months ago, in a good way, and I know that all of these things are the result of all the exercise that V is getting each day when she goes into the community. I see that she has a great appetite, and sleeps through the night. I see that she is smiling so much more now than a year ago and seems so much more peaceful. What more can a parent want than health and happiness for their child. I am thankful this week for the ability to see that V is well-fed with nutritious home-cooked food, well-cared for by dentists, nurses, therapists, doctors and support staff, and well-loved by her family. The behavior analyst commented on the dramatic improvement in V's quality of life over the past year during her most recent visit. V's support staff who have worked with her for the past 4 years commented recently on how much calmer and happier V is now than when she was in school. Ironically, I see more progress in skills and cooperation with therapists now than was ever reported within the structure of school.
Why is this the case? Why can our speech therapist get one hour of cooperative work with V now, when V would rarely work more than 15 minutes with a speech therapist at school? Is it because the work is now done in V's home and in the community? Is it because the current therapist has discovered what re-inforcers work or what activities V enjoys doing during sessions or just a good personality match? I don't know. Maybe the success is the result of all of these things working together.
What we know now, for sure, is that engaging in a power struggle with V does not work, but patience does. Demands do not work, but negotiation does. A rigid schedule does not work, but having flexibility does work. Pro-active anticipation of problems can prevent a lot of wasted time later spent resolving problems. When V is calm and happy, she learns and retains her knowledge and is able to show what she knows.
We have come a long way, but there is still lots of room for growth. I am thankful for the opportunity to be in the front row to witness these changes for the better and to be a part of them.
Tuesday, November 10, 2009
Disability Scoop Article today....
Visit this link to read the article today; http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/
This article says that a study of mothers with autistic children suffer from the same chronic stress levels as a combat soldier. Can you relate to that?
This article says that mothers of autistic adolescents and young adults are interrupted at work on average once out of every 4 days, as compared to once out of every 10 days for mothers of kids without disabilities. Well, I can easily see that one, for sure!
I recall one year when I taught at an elementary school and would receive frequent mid-day calls from V's school, asking me to come take her home because she had "thrown up". V wasn't sick when this happened, she was upset. Something at school would set off a tantrum. Crying would cause sinus drainage, that would set off coughing, that would set off her gag reflex and whatever was in her stomach would come up. When I took her home and missed work following these incidents, she would be fine the rest of the day. She had no virus, no fever, and no further incidents of stomach upset the rest of the day. I learned to ask the school nurse if her vomit had followed upon the heels of a tantrum, and if it had I asked them to allow her rest, change her clothes and then let her return to class if she had no further symptoms. I was a single mom, I had a job to do, and coming to take V home to play was reinforcing the behavior of vomiting after tantrums, a habit I did not want to encourage for obvious reasons. I received resistance to my request and pressure to come and take her home each time. I held firm, insisting that if she had no fever, no other symptoms of illness and no further stomach upset, there was no reason to take her out of school. The incidents declined in frequency and eventually were no longer a problem.
It is hard to be a reliable employee if you are a parent of a child, or dependent adult, with health or emotional problems. I eventually left my employment when the inability of support staff to get her on a school bus in the morning resulted in frequent morning calls to my school asking me to leave my classroom in the middle of teaching a lesson and come take V to school after the bus left without her. My daughter's demands on my time at work were unfair to my employer, my students, and caused me stress because of the conflict between meeting my daughter's needs and meeting my employer's needs.
As a result, I have sacrificed a good salary and benefits to be available to give my daughter the best possible care. Our level of debt is higher and savings are lower as a result. I only had the choice because I remarried. I don't know what I would have done without my husband's support. I think this is why many disabled adolescents end up in residential care instead of with their families. These are heartbreaking choices.
We are not alone with these dilemmas. These problems are receiving more attention now and, maybe will be followed by more support, eventually. I don't think that will happen until our economy has stabilized, and until then supports may actually be lost because of funding shortages. Hold on if you are struggling with these issues. Things get worse but then they do get better again.
This article says that a study of mothers with autistic children suffer from the same chronic stress levels as a combat soldier. Can you relate to that?
This article says that mothers of autistic adolescents and young adults are interrupted at work on average once out of every 4 days, as compared to once out of every 10 days for mothers of kids without disabilities. Well, I can easily see that one, for sure!
I recall one year when I taught at an elementary school and would receive frequent mid-day calls from V's school, asking me to come take her home because she had "thrown up". V wasn't sick when this happened, she was upset. Something at school would set off a tantrum. Crying would cause sinus drainage, that would set off coughing, that would set off her gag reflex and whatever was in her stomach would come up. When I took her home and missed work following these incidents, she would be fine the rest of the day. She had no virus, no fever, and no further incidents of stomach upset the rest of the day. I learned to ask the school nurse if her vomit had followed upon the heels of a tantrum, and if it had I asked them to allow her rest, change her clothes and then let her return to class if she had no further symptoms. I was a single mom, I had a job to do, and coming to take V home to play was reinforcing the behavior of vomiting after tantrums, a habit I did not want to encourage for obvious reasons. I received resistance to my request and pressure to come and take her home each time. I held firm, insisting that if she had no fever, no other symptoms of illness and no further stomach upset, there was no reason to take her out of school. The incidents declined in frequency and eventually were no longer a problem.
It is hard to be a reliable employee if you are a parent of a child, or dependent adult, with health or emotional problems. I eventually left my employment when the inability of support staff to get her on a school bus in the morning resulted in frequent morning calls to my school asking me to leave my classroom in the middle of teaching a lesson and come take V to school after the bus left without her. My daughter's demands on my time at work were unfair to my employer, my students, and caused me stress because of the conflict between meeting my daughter's needs and meeting my employer's needs.
As a result, I have sacrificed a good salary and benefits to be available to give my daughter the best possible care. Our level of debt is higher and savings are lower as a result. I only had the choice because I remarried. I don't know what I would have done without my husband's support. I think this is why many disabled adolescents end up in residential care instead of with their families. These are heartbreaking choices.
We are not alone with these dilemmas. These problems are receiving more attention now and, maybe will be followed by more support, eventually. I don't think that will happen until our economy has stabilized, and until then supports may actually be lost because of funding shortages. Hold on if you are struggling with these issues. Things get worse but then they do get better again.
Sunday, November 8, 2009
Hard times for Maryland
Local agencies that provide services to disabled residents with funding from DDA have taken a 2 percent cut in funding recently. One agency advises us that as a result they are consolidating group homes to reduce costs, and cutting out mid-day transportation to supported employment for clients, among many other cost cutting measures. Will a 2 percent cut to New Directions budgets soon follow? I would not be surprised and I am thinking about where I will reduce services for V if this should happen.
Further, the state unemployment fund is depleted because so many citizens have been on unemployment benefits for so long through this recession. The consequence is that my husband, who is a small business owner in Maryland, just received a notice from the state that his contribution to the unemployment fund for his one employee will be increased 6 times his current rate. If his contribution for his one employee is going to go from 200.00 a year to 1,000 or more, than I am imagining the impact of this on V's budget, as her caregivers are 5 employees that are paid from her DDA budget. State and federal taxes, and unemployment contributions are paid for these employees from her DDA budget as well. So, if we currently pay about 1,000 in unemployment contributions for these 5 employees, and we have to pay 6 times as much in the coming year, that will further reduce funds from the budget that are available to pay for other services that V currently receives. I am going to need to discuss this with our fiscal management agency.
For those, like V, who are too disabled to work and rely on SSI for all income, there was no cost of living increase this year from last.
The recession is hitting disability services here in Maryland, as it probably is all over the country.
Further, the state unemployment fund is depleted because so many citizens have been on unemployment benefits for so long through this recession. The consequence is that my husband, who is a small business owner in Maryland, just received a notice from the state that his contribution to the unemployment fund for his one employee will be increased 6 times his current rate. If his contribution for his one employee is going to go from 200.00 a year to 1,000 or more, than I am imagining the impact of this on V's budget, as her caregivers are 5 employees that are paid from her DDA budget. State and federal taxes, and unemployment contributions are paid for these employees from her DDA budget as well. So, if we currently pay about 1,000 in unemployment contributions for these 5 employees, and we have to pay 6 times as much in the coming year, that will further reduce funds from the budget that are available to pay for other services that V currently receives. I am going to need to discuss this with our fiscal management agency.
For those, like V, who are too disabled to work and rely on SSI for all income, there was no cost of living increase this year from last.
The recession is hitting disability services here in Maryland, as it probably is all over the country.
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