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.

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.

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.

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.

No pre-payments allowed by DDA

So, after getting prompt reimbursements for a year for the cost of a 10-lesson prepaid package at the stables for therapeutic horseback riding, I have been informed by the fiscal management agency and a DDA representative that this was not permitted and can not continue. The agency is worried that if any services are pre-paid, then if the services are not actually received during the fiscal year, that a refund will be paid to the person who was re-imbursed. I asked DDA, what if you pay the vendor directly and then any unused lessons will be re-imbursed directly to DDA via the fiscal management agency? The answer is still no. I don't really understand that, but that is the way it is.
So, the result of this ruling for us is that I can continue to pay for the pre-paid lesson packages and get reimbursed for the cost after the lessons are completed, or I can pay a higher price per lesson and pay as each lesson is taken, filing for reimbursements much more frequently than before. Since it would cost significantly more to pay as we go, using much more money from the budget than anticipated, I will carry the cost of the pre-paid lessons for my daughter, but I can see that this policy would either increase the cost of these services or create a financial hardship for a family that has fewer resources than we have to do the same.

Anyway, as you budget for services, realize that you can not take advantage of any cost savings offered by prepayment unless you can wait until all of those prepaid services have been used to apply for re-imbursements. There is no case-by-case considerations or exceptions. It is a blanket policy.

Make It Your Own

The joy of New Directions is the ability to individualize the program for the client. While V has a budget for art supplies because that is calming for her, another client has a budget for music therapy because music is "his thing". I would like to post more about the Music Therapy option for those readers who are interested in that option. That client also enjoys participating in group dance classes through a therapeutic recreation program.
What are your limitations? Well, if it maintains or increases current skills, health, or safety then it is a possibility to include that activity or resource in the Plan of Care and Budget. If the resource or activity maintains or improves access to community resources, maintains or improves behavior that impacts socialization and learning then it is possible to include that in the POC/ budget.
I encourage readers to include ideas that you have found that meet these guidelines in your comments. Is the client capable of taking classes or having a small business with support? Then those are options.
The biggest challenge to self direction is finding providers of services, so if you have found a provider that will take on additional clients, then please post some information about them for other readers and I will create a link. We can help each other by sharing information, experience and knowledge so that each of us won't have to re-invent the wheel, so to speak.

Why reject the community pathways model of care?

In theory, a licensed group home should provide a safe, caring environment for a person with a developmental disability. For an individual whose parents are no longer living or whose parents have their own health issues and are unable to provide care, it is the most prevalent alternative. Some people thrive in this environment, so why take on the day to day responsibilities of caring for a disabled adult?
Read this story : http://www.law.com/jsp/nlj/legaltimes/PubArticleLT.jsp?id=1179824708875&slreturn=1&hbxlogin=1 that describes the problems in the D.C. group home system.
Read this article: http://findarticles.com/p/articles/mi_qn4191/is_20070217/ai_n18637111 about 3 Colorado group homes that had to be closed.
Read this article about a group home in San Jose : http://www.metroactive.com/papers/metro/01.12.05/disabled-0502.html

Can things go wrong when a disabled adult lives at home with family and caregivers are paid to come into the home? Yes, they can go wrong. However, with the oversight of family members who care enough to be closely involved, problems can be observed and corrected quickly. It is unrealistic to expect perfection in any model. What can a family do to ensure that the care is the best possible in their own home?

First, look for support staff who have experience in area of the clients greatest need. For V, behaviorial issues have been her biggest obstacle to progress. I always look for someone who has experience with clients who have exhibited similar behaviors and who have a calm disposition, who do not become easily frustrated by these behaviors. I can train other skills, but I can't train the right disposition for this work.

Don't be lazy as an employer. Check the references. If the references don't respond, ask for more references. Recently, I almost hired someone, but thanks to a responsive reference, found out that there was a history of unreliability and decided not to hire the person as a result.

If driving is part of the job, take the time to check the driving record of the individual with the Motor Vehicle Adminstration. Any employer can do this by downloading the form from the MVA website and paying a $9.00 fee for the report. It takes a couple of weeks to get the report back, but is worth the peace of mind.

Don't leave a new employee alone until you and the employee are confident that they can handle the job without support. Drop in frequently, at unexpected times to observe care and interactions between staff and your family member.

Provide ongoing training to support the skills of your staff.

Ask questions every day about how the day went. Give your staff opportunities to ask questions or express concerns, both verbally and in writing.

Keep and attract good staff by paying them at the top of the market and by acknowledging good performance. A thank you from time to time can mean more than an extra dollar an hour. Be responsive to the needs of your staff and don't complain if they need time off for sick children or a vacation. Employees have their own lives and needs and won't remain in a stressful or unappreciative work environment.

Finding and training good staff is time consuming and a lot of work, in addition to expense from the budget to pay staff for the time they are in training. Your family member will benefit from stability in their care and routines if you hire and train carefully and then provide the conditions that make staff want to remain in your employ, even in areas of high employee turnover.

Another Good Local Psychiatrist Found for Medication Management

When KKI moved the outpatient clinic to a downtown Baltimore location, where a transition to and from a nearby parking garage would be required for appointments, I decided that it was time to locate new psychiatric services for V. I was not unhappy with the care that V received at KKI at all, but if she isn't excited about going to an appointment, the shorter the distance that we have to take her once we are out of the car, the easier things go. Once in the office, it is always possible that she will want to leave abruptly, and so using the valet parking would not be good for us since would then not know where to find the car if we had to quickly take her back to it.

Finding any doctor who takes medical assistance is challenging, but networking with other parents and the ARC of Montgomery County led me to Dr. Ghislane Fougy in Silver Spring. She does accept Medical Assistance and was accepting new patients. The travel time is about 30 minutes shorter than driving to the Greenspring campus of KKI was for us and that is good. I found Dr. Fougy to be pleasant and easy to work with. Since V is stable on her current meds, she is not trying to make any changes to them, which was a relief to me. V had soaked through her pull-up when we arrived, and Dr. Fougy was patient and helpful while we changed V into dry clothes, bringing us a plastic grocery bag to put wet items in and using the opportunity to observe V's abilities and responses. I had sent an email in advance of our visit to give her the background that I thought she would need, but that might be hard to give her if V were impatient, and Dr. Fougy had read the email and commented that she didn't need to ask a lot of questions because I had already answered most of them in my email. V will need to return in 3 months, but it is okay with Dr. Fougy if they support staff bring her, so I won't need to accompany her for that visit.

I was nervous about changing doctors, but happy with the outcome this time. For any local families that need med management, I would recommend Dr. Fougy.

Having a Vision

Many people have a vision of life as it could or should be. There are sayings like, "You have to believe it to achieve it." to promote the idea of a vision as a first step toward your goals. I am thinking about this because my kind friend says it was my vision for my child, and the energy to get behind it that has brought V so far in the past year. Thank you, Irene.
Someone has to have that vision of what the closest thing to a perfect life would look like, given what limitations are unavoidable. Then, that someone has to get others to believe that it is a goal worth working toward. One person starts the process, but can't achieve it alone. It is truly a team effort to make that vision a reality.
I apply to my daughter's life the same approach I apply to my own. I ask, what would a perfect day look like? What would the ideal partner in life be like? (That one I asked before I met my husband, and I wrote the answer down. About 2 years after I married, I found that description, and realized that the person I had described was the man I was now married to.) What do I want to achieve by the end of the next year? I really believe that you can't get what you really want if you don't know what you really want.
I don't believe that disabled people, or the families that care for them, have to accept only the options that currently exist if those options don't match the vision of the best life possible. If the ideal doesn't exist yet, then be part of the movement to create it. I could not count how many people have said to me, "I could not do what you have done." I don't believe them. No one knows what they can do until they have to. Sometimes it is just putting one foot in front of the other until the end of the day, falling into bed, and getting up to do it all over again the next day. The only option that I could never face, when it comes to my daughter, is giving up. I have feared failure, feared not having the strength to hold it all together, but never stopped actively pursuing something better. Good things in life don't just come knocking on your door, you have to go and get them.
The status quo does not like to be shook up. It is easier to live with what is, then to create something new. Some people's jobs depend on keeping the status quo. Be stubborn. Be persistent. Be persuasive. Be patient. Be flexible and keep an open mind. There is a way, it is just a case of finding it.
Talk to others who have similar concerns and work together. Gather your facts. Talk, write and call people who can make a difference. Believe that things can keep getting better!
Funny, I am talking about a better quality of life for disabled people, but these things really apply to almost any endeavor, don't they?

The Dreaded Medical Appointment

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.

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.

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.

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.

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.

Special Olympics

We are venturing into new territory for V. In a couple of weeks, we will try cycling with the Special Olympics of Montgomery County, Maryland. I happened to be looking for a psychiatrist closer to home than Baltimore and had called the ARC of Montgomery County to find out who their clients use. Haydee De Paula called me back and, in the course of a lengthy conversation, recommended that I call the coach of the cycling group and gave me his name and number. Since V's adapted aquatics coach had already mentioned Special Olympics to me for V, I gave him a call. He was very helpful and friendly. The group meets Saturday mornings from 9:00-10:30 for practice,starting in late June. He suggested that I fill out the medical registration forms and send them in to the Maryland Special Olympics office, and I shared my email address with him so that he could inform me of schedule information. The coach said that participants are required to wear helmets and to have a dedicated partner to ride/walk with them. He said that he had a spare adult tricycle that V could try at first and if she liked it then she would need to provide her own bike. The group meets at Bohrer Park or the Maryland Great Falls trail at the end of Falls Rd. So, we will try it out and see. It is the activity most likely to appeal to V since she has been learning to use the stationary bike the past few months. If it works out, it could provide some social opportunities for her with peers. Look for a link to the Special Olympics website and further updates on this.

Legal Considerations

Two issues arise as your disabled child grows up. First, when your child turns 18, hippa privacy laws require that medical information only be released directly to your son or daughter unless they have authorized you to receive it. If your child has limited communication skills, like mine, this can present a problem when you need to speak to someone over the phone on their behalf. Naturally, when you speak to a medical professional who can see your child in person, or who knows them, they will understand that you need to represent the interests of your child. However, there are times when you may need to ask for lab results over the phone, or speak to the health insurance provider, and the person on the other end of the phone won't speak to you because your child is an adult and this person can not see that your child can't speak for themselves. In this instance, it is helpful if you can establish that you have legal guardianship, if the severity of the disability requires that you communicate with medical professionals on behalf of your child.
I have obtained guardianship of V to address these issues. There have been times that written proof of my status as guardian have been required. I was lucky to have an attorney who is a personal friend and did the legal paperwork for free as a favor. I was lucky because it can cost thousands of dollars to hire an attorney to do this. If you can not afford to hire an attorney, it may be possible to represent yourself or get advice from a legal aide office. If you do pursue this avenue, a temporary guardian will be assigned to your child to represent their interests. You will be required to have at least 2 physicians complete documents that indicate to the court that guardianship is necessary. Then, once the guardianship is approved, you have to file forms once a year with the court, documenting what you are doing as guardian. This is not complicated or difficult.
The other legal matter to consider is the need to set up a Special Needs Trust for your child. If your child receives medical assistance or other services and you die unexpectedly, the inheritance that your child receives from your estate could disqualify them for the services that they depend upon and disrupt their lives in ways that would not be in their best interests. With a special needs trust, you can indicate that inheritance or life insurance proceeds go into the trust upon your death, where the funds will be managed by someone you designate, and where your child will be protected from the disruptions to services that might occur otherwise. If you do set up the trust, then make sure to provide grandparents or anyone else who might leave money or assets to your child with the trust account number and direct those parties to be sure to leave any inheritance to the trust rather than directly to your child. The special needs trust funds can be used to purchase the extras that the state will not provide for your child after you are gone.
It has given me peace of mind to have these matters taken care of and to know that I have done what I can to provide for the future. You don't have to fund the trust with more than $100.00 at the beginning. It won't be needed as long as you are around. If you are in my area and want the name of the attorney I used for the trust, I would be happy to share the name with you.

Always Finding Solutions- Incontinence Products

If a way can be found to have your child/ adult consistently use the toilet, that is the best solution, of course. But, if that has not been possible, for whatever reason, and you need to use disposable undergarments on your teen or adult child who is too large for the Goodnights products, then Depends and the store brand generic equivalents are useful. For years, I bought them for V, paying out of pocket, at local stores. No one told me that these products are covered by medicaid, can be ordered over the phone and delivered to your house on a monthly basis. I found this out when I discussed the need to cover the expense of these products in V's DDA budget for her adult plan. At that time a DDA employee explained that it would not be necessary since medicaid covers these products. Sure enough, I called Amerigroup, which is the plan that we have selected, and they referred me to Medi Rents & Sales. MediRents got a prescription for Depends disposable undergarments, chucks for bedding, and disposable latex or vinyl gloves, to be delivered monthly and fully covered by the insurance.
Unfortunately, after a year, MediRents decided not to carry Depends and switched to an inferior generic product that was ineffective for V. A few phone calls later, I located another company, Edgepark Medical Supplies, that could provide the products that I needed and we now use them instead. I like Edgepark better because they send the products out automatically, without waiting for me to call them to re-order. They have a website that shows the customer when the order was sent out and gives a tracking number so that the customer knows when the order will arrive. I never run out of supplies now and don't have to worry about whether a store will have the products in stock in the right size and absorbency, the way I used to.
So, if your child needs these products and you have medical assistance through a state waiver program, stop buying your incontinence products at the store. The only thing you need that is not covered is the wipes. See the link at the top of the page for Edgepark.

Always Finding Solutions - Hair

For many years, V had long hair, that was quite pretty when brushed, but always fell forward into her eyes and mouth. I always had to pull it back into ponytails or braids, but it continually tangled into knots and fell out into a halo around her face. She hated getting the knots combed out. A short hair cut was a problem because she wouldn't sit still in the stylists chair and I couldn't even be sure that she would stay in the salon at all for long enough to complete a haircut. A short cut would require frequent trims and all the problems presented by that. One day I had enough and decided to take the scissors to her hair and cut it short myself. It was okay, but not a good cut. However, it was much easier to wash and dry and it stayed out of her eyes and mouth and didn't get tangled. So, I set out to get her a decent short cut and maintain it properly. I went to our local mall where there is a Cartoon Cuts that specializes in cutting children's hair and I asked the receptionist if any of the stylists would consider making home visits to do hair cuts. One stylist only lived 5 minutes from my home and was delighted to come to our home to cut V's hair in her playroom. Now, V has her own stylist come to her room about once every 5-6 weeks to give her a trim and her hair looks very nice. It doesn't cost more than it would to go to the salon and it is far less stressful for everyone. I have recommended the stylist to V's nurse, who also has a disabled daughter, and this has solved a problem for her as well.
If visiting a hair salon is problematic for your child, give this a try. No more messy ponytails or unprofessional looking haircuts for V!

Always Finding Solutions - Clothing issues

Today I posted a new link to a company that solved a problem that has come up a couple of times over the years. Buck and Buck is an online store that sells clothing for residents of nursing homes, and all of the models are quite elderly. However, I have found that my daughter has shared some of the behavioral issues that are also associated with the behavior of patients with alzheimers, including disrobing at inappropriate times. This has always been the expression of frustration when there is nothing else available on which to physically act out that frustration. Buck and Buck sell jumpsuits that zip up the back and are made from the same material as a soft, warm sweatsuit. I found that by purchasing several of these jumpsuits and having her wear them for a while, she eventually learned that removing her clothing was not an option and stopped trying. Then, we were able to resume the use of her normal clothing. Under ordinary circumstances I buy clothing for V that can be most easily put on and taken off independently by her, but when the disrobing behavior escalates, the jumpsuits preserve her dignity in public and extinguishes the behavior without the need to physically block it by anyone. We all know that the less attention that is given to a behavior, the sooner it stops, and these products hold up to a lot of pulling without tearing. I tried some other products, but they tore at the seams when she pulled on them and didn't hold up well when laundered.
If your teenage or adult child has this problem, here is one solution to try that worked for me.
Do you have trouble taking your adult child into clothing store dressing rooms to try on outfits? Well, did you know that Lands End has an online store with a "virtual Model"? All you have to do is take your child's measurements and type them into the program. The program will show you what the outfit will look like on your child's body type and what sizes you should buy. So, you have an option to buying clothes, trying them on your child when you get home, and returning items that don't fit.
Need shoes that your child can put on and take off easily, but won't fall off when you don't want them to? Easy Spirit has a product that has been great for V. It is a suede shoe, like a sneaker but no fasteners or laces of any kind. It is very soft and doesn't leave blisters, even the first time it is worn and it comes in many colors.
Those are a few solutions that I have found. Please post the solutions that you have found!

The Marathon: Providing for a Special Needs Child

I call this post the marathon, as opposed to the sprint, because you have to pace yourself to make it to the end. Providing for a special needs child is a long term commitment, even if you do not provide the direct care yourself. As a child with a severe developmental disability grows up, they change physically, but do not separate from you in the way that a normal child would. They still need care in many of the ways that a younger child would.
If you provide the care yourself, it can severely limit the pursuit of your own goals and interests and you can lose your sense of yourself in the desire to meet the needs of your child perfectly. If you allow others to provide the direct care, then you may worry if your child is safe or happy and if you are providing sufficient oversight to ensure the well being of your child. The challenge is to strike the balance between involvement to the point that it overwhelms your own life, and lack of sufficient involvement to be adequately assured that your child's needs are met.
Finding and maintaining that balance has been an ongoing goal for me. As parents, we have to remember that we have many roles in our lives besides our role as a parent. We are the children of our parents, we are siblings, we are friends, we are employees, we are neighbors and we have interests and passions apart from our children. We have to allow time for all of those roles if we are to maintain our own identity and not lose our perspective. Do you make time to eat well and exercise? Do you get enough sleep? Do you have a creative or spiritual outlet in your life? You must take care of yourself physically and mentally to be the best that you can be for your child in the long run. If you don't, you run the risk of caregiver burnout.
Every now and then I have read a tragic story in the paper of a murder/suicide committed by a parent of a special needs child. These parents drowned in the attempt to meet the needs of their child without sufficient supports and they drowned in the belief that if they could not personally meet the needs of their child, that no one would. It is that fear that we carry, "If not me, then who?" There is no doubt that guilt follows the decision, on occasion, to put our own needs first.
Do you suffer the same recriminations that I do? Do you think, " I should be more patient." "I should be more attentive." " I should put more time and effort into my child's care/program."
I make mistakes and disappoint myself sometimes, then I forgive myself and move forward. I know I will never do this perfectly and I don't even know what perfect would look like.
I do know that it is important to take breaks, have fun and relax, put your worries aside on a regular basis. This is how you recharge your batteries and come back to this task refreshed and ready to give your best.
To parents of special needs children of any age I say,"Be kind to yourselves and be forgiving of yourselves. Allow others to help you, even if they won't do the job the way that you would. If your child is safe, healthy and relatively happy, then it is okay."

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.

Coordination of Resources for Parents

The title of this post is misleading. It was my experience that there was no centralized source of information to guide parents to the services that they needed. If there is now, I still don't know about it. That is the primary reason that I am writing now. Privacy regulations, while protecting the privacy of children and their families, also prevents parents of disabled children from finding each other, talking to each other and sharing important information.
When I finally tapped into the respite services after V's stay at KKI, the agencies involved were shocked that they had not heard of V years earlier because of the intensity of her needs. They could hardly imagine that I had made it on my own with her for so long.
You would think that, at the point that a child is identified as having a disability, they would be assigned to the case of a social worker, or someone who would direct them as to who to call to arrange necessary resources and supports. You might think that contact names and phone numbers would be provided. It could have happened when Child Find made the identification. It didn't. It could have happened through the pediatrician when he became aware of the severity of V's disability, but it didn't. It could have happened through the school system, because of the special education services that V received there, but it didn't. Most of what I found for V was found by accident or by dogged determination to solve a problem. But, a parent can't look for something that they don't even know exists.
I don't believe that the pediatricians or special education teachers are informed about these resources. They are concerned with their particular role in the life a child. If they had the knowledge, I believe they would share it when appropriate.
What would help a parent in my position? It would have helped if special education teachers and pediatricians were provided with a list of resource contact names and phone numbers that they could share with parents, early in the life of a disabled child. What did I need to know? I needed to know that respite services were available and how to access them. I needed to know the name of a dentist who had experience and the desire to work people with developmental disabilities. The name of a pediatrician or general practitioner with expertise in the area of developmental disabilities, a neurologist, and eventually when my daughter became a young woman, a doctor who could address those issues who understood that examinations might be difficult at best. I could have used contacts to help me make my home safer and to make transportation safer. I could go on and on, but you get the idea. Now, since Maryland has the Autism Waiver for school age children, parents can receive a list of respite care providers and contractors that can address some home safety or accessibility issues. However, try to call those contractors and good luck getting anyone to answer or return phone calls. When V was covered by that waiver, I tried again and again without any success at all.
I have thought for years about how the necessary information could be disseminated to the people who need it most. What office or agency could take the lead on this effort. Anyone out there who has a thought about this, please post your comments.
Raising a disabled child can be an isolating experience in certain ways. Friends and family who are raising normal children have their issues, but they are different issues. They would help if they could, but for the most part don't know how. Even other parents of disabled children have different concerns because no two disabled children have the same needs or abilities.
I would tell another parent to be an advocate for their child. Don't be intimidated by professionals and don't worry about being liked or being easy to work with. I don't mean that anyone should be rude or unpleasant. I mean that parents need to ask lots of questions until they fully understand what doctors and teachers are saying and why they make the recommendations that they do. Contribute your views and your knowledge of your child and argue strongly for the things that you believe, but be prepared to back up your position. An informed, involved and articulate parent will be listened to.

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.

The Elementary School Years

When V was very small, she went to home-based day care centers when she was not in school or with family. During this time in her life, she wasn't so different from other children in her abilities that it caused a problem for caregivers. As she became older and larger, this was no longer true.
After school care that was designed for normal children was not equipped to meet V's needs. It became necessary to find people who could care for her in my home. Needless to say, that was more expensive than typical daycare options. The cost of this 1:1 care exhausted my savings pretty quickly.
After V had spent 3 years in the local elementary school, Delta decided to close my office and I had to make a choice to move to another part of the country and stay with the company or take a severence package and find something else to do. I was offered the option of moving back to Annapolis with my parents if I wanted to go back to school and pursue a teaching degree and a new career. I already had a bachelors degree in Human Development, and was able to find a Master's Certification Program in Education at the University of Maryland, in which I could complete 43 hours in 12 months and come out with an M.Ed and a teaching certification. So, I applied and was admitted to the program. I rented out my house, put my furniture in storage, and started school. This meant a transfer to a new school for V, and she was placed at Central Special in Edgewater,MD. Although it was an Anne Arundel county public program, it was not like the elementary school V had been attending where regular education and special education programs were in the same building. This school was structured more like Ivymount had been. No regular education classes existed in the building.
As this school continued to struggle with a behavior management plan without success, I learned of a place in Baltimore with an extraordinary reputation for helping children, especially those who had developmental disabilities and related behavioral problems. The principal of Central Special strongly encouraged me to look into the in-patient or out-patient program of The Kennedy Krieger Institute. I was very resistant to the idea at first. As time went on and I saw how V's behavior interfered with every aspect of her life, especially as it related to her school experience, I eventually agreed to an evaluation by the Kennedy Krieger Team.
By the time this happened, I had finished my master's degree and moved back to my own home in Montgomery County. V had been placed at Longview School upon our return to the county, rather than back in the elementary school where she had previously attended. It was another bad fit. The population of students at Longview were profoundly disabled and medically fragile, while V was low functioning, but more capable than the other students and she was physically healthy. Since she had her 1:1 classroom aide, she had a very individualized program. The physical environment of Longview was better for her than the elementary school because she was not overstimulated there, but she really had no peers to interact with. The county simply could not identify a really suitable placement.
While waiting for a nearby teaching opportunity to become available, I worked as a sales manager for a local travel agency. During this time, V was evaluated by KKI and deemed an appropriate candidate for the Neurobehavioral Unit (NBU) at their Broadway Campus in Baltimore. She was placed on a waiting list for an opening on the unit. Up to this point, V had recieved psychiatric treatment at KKI by Dr. Elaine Tierney, a very kind and dedicated doctor. Dr. Tierney prescribed Risperdal to alleviate some of the symptoms of the mood disorder that V seemed to have. It seemed to have a calming effect upon V, but also increased her appetite and weight. I adjusted my food preparation methods and we had it under control. Then, right before New Years, V cleared the NBU waiting list. This was the beginning of the most intense 6 months of my life.

Early Identification and Intervention

I became a single parent when V was about 6 months old as a result of separation from my first husband. At that point in time, we did not know that V was going to have any developmental issues. She was a normal, active and alert baby, meeting all the developmental milestones on time. The first sign of trouble I saw was that she had a lot of difficulty taking food from a spoon instead of bottle. Then I noticed that she wasn't experimenting with her toys, only putting them in her mouth or banging them against something. I also noticed that she wasn't experimenting with different vocal sounds and she wasn't crawling or walking. The pediatrician was not concerned, but our family practitioner listened to my worries and sent us to Child Find for an evaluation when V was about 11 months old. At Child Find, delays in cognition, speech, and motor skills were identified and we were provided with a home visit once a week by a special educator in Anne Arundel County, where I had gone to live briefly following my separation. When I returned to my home in Montgomery County, when V was about 14 months old, she was enrolled in the PEP (PreSchool Education Program) for infants.
The teacher began to speak of Sensory Integration Disorder. V suffered from tactile and auditory defensiveness. She didn't want to touch things with her hands and, instead, grabbed my wrist and used my hand as a tool to pick things up for her. She didn't like to walk on a variety of surfaces in bare feet. The sound of a cracking ice tray or rattle of a crumpled plastic bag could send her into hysterics. When she began walking, she didn't seem to know when her feet were going to hit the ground, making her steps awkward and heavy.
Medical testing to determine the cause of V's problems began at Children's Hospital in the District of Columbia. Blood tests and genetic testing revealed nothing out of the ordinary. An MRI of the brain did not indicate any abnormality in the structure of the brain. No explanation could be provided for any of V's troubles. The trips to D.C., the long periods spent in waiting rooms to see the doctors, and the insensitivity of the employees performing the tests on my baby made this experience for me nightmarish. I have heard glowing reviews of Childrens Hospital, but my experience with the institution was anything but glowing. The insurance forms that they gave me were not coded the way that my insurance company required, and so it was a year of going back and forth with the hospital, asking them for the necessary insurance codes and instead of getting the necessary information so that insurance would pay, the hospital harassed me to pay the bills without any way of getting reimbursed. Just the additional stress that I did not need.
Meanwhile, the need to take the baby for tests and appointments and to be present two days a week for participation in the PEP program was hurting my job presence. Delta put me on 6 months probation for missed work time, and I had to go six months without missing another day or risk losing my job. I didn't miss a day but I did go to work with the flu and a fever of 104 degrees. I am sure that many others missed work because of that, but when you are a single parent you do what you have to do. To the credit of the management, when I explained that I needed to be available to take V to PEP, they created a schedule for me that no one else had, just to make it possible for me to help V and not miss work. For that I am forever grateful.
V's PEP teacher recommended a placement at a private school in Rockville, called Ivymount, where she could receive intensive help with her sensory problems. The following year, V entered the toddler program at Ivymount and remained there for 3 years while she received the services of speech therapists, occupational therapists and physical therapists. She attended 3 half days a week the first year and then 5 days a week the next year when she entered the preschool program at Ivymount School. The work that they did with V made such a difference to reduce her tactile defensiveness. I am very thankful that V had those 3 years at Ivymount and, if I had it to do over, I would not have transferred her to a public community-based program when she turned 5, as was suggested.
I have to credit the staff at Ivymount for bringing V's petit mal seizures to my attention when she was 3 years old. These seizures can look like V is spacing out, but she is not, as the EEG will confirm. Still, it is hard to tell the difference between a daydreaming child and one having this type of seizure. Medication trials to treat the seizures were distressing. The first and second types of medication that the neurologist prescribed, caused V to stumble about as if she were drunk and they did not stop the seizures. The third medication worked without side effects after a few adjustments to dosages, and we have used Depakote to successfully control the seizures ever since. About the same time, the teacher at Ivymount reported the beginning of tantrum behavior at school.
This is when V's first behavior modification plan was put in place. At home, this meant the strictest of discipline, in terms of never giving in to tantrums. In its simplest form, the plan meant not ever reinforcing tantrums by rewarding them. It meant choosing my battles carefully because I was told that any demand I made on V would have to be enforced regardless of how strongly she reacted, and any time I said no to her when she wanted something, I would have to hold firm on that no as well.
In the community based program, the classroom was in a regular elementary school and there were more children in a classroom than at Ivymount. The bottom line for V was that she became very easily overstimulated by the activities and sounds of the larger class and the school building as a whole, not to mention the community outings. The teacher was wonderful, but the environment was not a good match for my daughter.
to be continued....

The Second Challenge: Safety, Part 3

Night Time
V loves hot drinks. She loves hot tea, coffee, and cocoa and calls them all "Hot". I figure out the difference between them depending on whether she is pointing at the tea kettle, the coffee pot, or pulling the powdered chocolate out of the pantry. Many times she watched me turn on the stove to heat the water in the kettle for a cup of tea. She watched as I took out a tea bag and brought out the sugar bowl and a spoon. Then one night as I slept, I heard a noise downstairs and looked at the clock beside my bed. It was about midnight. I got out of bed and went to the top of the stairs where I could see that the light was on in my kitchen. Curious, I went down stairs and found V sitting at the kitchen table with a coloring book and crayons, happily coloring as she patiently waited for the water to boil. There on my kitchen counter sat a tea bag, the sugar bowl, a mug and a spoon. I looked at my stove and realized how close to disaster we had come. V had turned on the knob to heat the oven instead of the burner, thank goodness. A dishtowel lay carelessly across the counter, it's edge resting on one of the stove burners and I could see how easily a fire would have started in my kitchen if she had turned the knob for the burner instead of the oven, as she had meant to. That is not even considering the real possibility of a serious burn if the water had boiled and she had attempted to pour it into the mug. V had not learned when to stop pouring when her cup is full and she still hasn't. I put everything away and turned off the oven, thankful that disaster had been avoided, and a little bit impressed that she had learned all the steps to making a cup a tea, and took V back to bed. The next day I unscrewed her door knob and replaced it so that the lock faced out into the hall instead of into her bedroom, and I locked her bedroom door at bedtime. I have done so ever since, to prevent her from wandering the house while I sleep and getting into danger. If she gets up in the night, I hear her over the baby monitor that I use, and she will knock on her door to let me know that I am wanted for help.
I know of a family who has hired a caregiver to spend the night in their son's room to keep him safe while the family sleeps at night. I have visited group homes where there are night shift staff that sit in the hall watching video monitors of the clients rooms to ensure their safety. When our kitchen incident occured, I was a single mom, working full time and I did not have the resources to hire someone to watch over V at night, so my solution was practical and affordable for me.

The Second Challenge: Safety ,Part 2

Public Transportation
For some people using the New Directions Waiver, the most economical transportation option is Metro Access and DDA will allow waiver funds to be applied to this cost. It operates like a taxi service with handicap accessible vans. For V, having to wait when she is ready to leave a community destination could put her support staff in a difficult position. When V is ready to go, she is ready to go and will begin walking if no vehicle is available. Physical restraint tends to escalate any agitation on her part, and there is just no reasoning with her if she is determined to do something. A private vehicle that is ready to go when she is, for V, is the best and safest option for her, for the staff and for the public.
We have taken a successful subway train ride and will probably try that again at some point, but there is no subway stop near our home.
Safety in the Home
Adaptations have been made to our home that have created a safe place for V to relax and play. Around the age of 15, V escalated her physical expressions of frustration to a level that caused me such worry for her personal safety that I considered placement at a residential school for her. Glass topped coffee tables and dining room tables were intentionally tipped over by V and the large chest of drawers in her bedroom were pulled over, with nightstands being rolled end over end across the room. A medication change to Topamax gave nearly miraculous relief from this behavior for a couple of months and I began to address the furniture issue by bolting the chest of drawers to the wall so that she could not pull it over onto herself. One of the scarier things that she wanted to do was to shake the t.v. and pull it toward herself when she became emotional about a movie that was on. Close supervision anytime the t.v. was turned on became very important for her physical safety. She began to pull the drawers out of the entertainment center and throw them or pull them out just enough to climb up on them, like stairs, risking a dangerous tip over of the entire unit.
Eventually, I found a small local custom furniture design center, Sarkissian Interiors in Gaithersburg, MD. Mr. Sarkissian and I sat down and I described to him a custom wall unit with 3 parts. The first part needed to house a T.V., VCR and related entertainment equipment, with the T.V. protected by a heavy duty plexiglass door, that could be pounded on and not break. The storage space needed to be lockable with keys, but no handles to pull on or step on, and the entire unit needed to be strong enough to handle kicking without damage. The second unit needed the same locking plexiglass door to house a computer monitor and a locking drawer for the keyboard and mouse. It needed a roll out bench seat below the computer desk, so that it could not be thrown or tipped over, and that could be pushed under the desk and locked in place so that it could not be climbed on. Finally, the third part of the system was a simple work desk with the same locking roll out bench seat. Mr. Sarkissian took it step further, and made the seat cushions out of a removable vinyl pad that could be wiped off or removed for cleaning, and that attached to the bench with velcro. This custom entertainment system works beautifully and addresses all of our safety concerns. Mr. Sarkissian has the plans for our system and could reproduce any or all of the 3 components for anyone who wanted one. Mr. Sarkissian had designed the furnishings for the pychiatric ward of Georgetown Hospital, and so I had confidence that he could help me with my project, and he did. The one part of the system that we don't use very much is the work desk. V prefers to work on a large folding table that we bring into her room for the purpose of her artwork. Because the workdesk has closed in sides, it is hard for a caregiver to sit next to V and help her with anything that she is doing. If I were to make a design change to the desk, it would be to open up the sides of the desk.
As for other features of the playroom that we built for V, the only light fixture is on the ceiling, out of reach. The closets and bathroom doors can be locked with keys, so that no destruction can occur if she needs to be left alone for a few minutes to calm herself. Walls are covered with construction paper artwork that V has created and if she pulls it down when she is upset, it can be thrown away and replaced with new artwork that she creates. The floor is washable tile, easily cleaned if glue or tempera paint spills, and Ikea couch cushion covers are all removable and washable. This is V's space, though she likes to join me in the evening on our family room couch for snuggle time before bed. Having a safe space for V allows our family to coexist with less stress for everyone. I realize that not everyone can go to the lengths that we have, but for us, this works.

The Second Challenge: Safety

V's petit mal seizures and her tantrums began at the age of 3, but there were earlier physical expressions of her frustrations. As a toddler, I remember how she would try to bite the carpet or the arm of a chair. Unfortunately, she soon learned that her hand was a more convenient target for her little teeth when she was overwhelmed. Hand-biting became her go-to release, and although she didn't break the skin, she bit her hand so often that the skin on her hand became calloused from the bites. Other physical expressions of her frustration followed in later years, from scratching, pinching, biting others, hair pulling, kicking, droppping to the ground and screaming, throwing or knocking over any available item, or tearing off her own clothing. Naturally these behaviors garnered V quite a bit of attention, as they were nearly impossible to ignore. School put in place behavior management plans, with little impact.
Transportation Safety
Since tantrums could occur in moving vehicles as easily as anywhere, the school bus staff provided a safety vest for V to wear on the bus to keep her in her seat for her own safety and the safety of others. I eventually purchased one of these harnesses for use in my personal vehicle, but as long as she was sitting in the seat behind me, she could still reach me while I drove if she became agitated. I feared that one day she would cause me to have an accident while driving, and eventually this fear was addressed by the purchase of a vehicle with a 3rd passenger row where she could be safely restrained with her harness. A seat belt is not sufficient restraint because she can unhook it and doesn't know how to put it back on. It is not safe to have to keep pulling off on the side of the road to rehook the safety belt, so the type of vest that was used on the bus is much more secure. I have created a link at the top of the page to the company that makes these vests and they can be purchased by private individuals and shipped. Now that we have the 3rd passenger row of seats and use the safety vest, I feel that everyone on the road is safer when V is riding. As you can imagine, public transportation presents a challenge on many levels. First, waiting is a skill that V is still learning, and patience is not her middle name. I have not attempted to fly anywhere with V since she was 9 years old and we took our last flight.
Like other people, I purchased 2 tickets on AirTran from Dulles International to Fort Lauderdale, Florida to visit V's paternal grandparents. At the gate, she wanted to board the flight but they were not quite ready to board and she dropped to the floor and had a tantrum more typical of what you would expect of a two year old. She calmed down, but as we walked down the jetway to board the flight, the pilot came out of the plane and pulled us out of line. He proceeded to survey the other passengers in line, asking them, "Do you think these people should be allowed to fly on this plane?" One of the passengers whispered to me,"I would sue this company!"
I explained to the pilot that my daughter could not understand why she couldn't board the plane, but was perfectly happy now that she could and that we had flown many times without any danger to anyone. I also told him that we had purchased valid tickets to travel, just like everyone else in line, and that he would expose his company to a discrimination law suit if we were denied boarding. The pilot backed down and allowed us to travel, but placed us in the last row of the plane, blocking off the rows beside and in front of us, as if we were contagious. V was perfectly behaved during the entire flight, because she loves to fly and one her few words is "plane". I dreaded the return trip but called AirTran to report what had happened to get an assurance that we would not be treated the same way on our return flight. The supervisor arranged an escort for us through the airport and to our seats, and we had an uneventful return trip. However, that experience left such a bad taste in my mouth that I have never attempted to travel by air again with V since then. To say that the experience was humiliating would be an understatement. It is sad because we had traveled on standby with my former employer, Delta Air Lines, many times before and been treated very well. The only difficulty I had was that V was very sensitive to the sound of voices over an intercom, and every time the pilot or flight attendant spoke over the intercom, V would become agitated and grab on to me in a panic. But this behavior only impacted my comfort and V's, not the safety of anyone else.
...safety to be continued...

The First Challenge: Health part 4

Learning to handle the stimulation of a restaurant and still behave appropriately is one of our community goals. Learning to patiently wait in line for a turn and wait for food to be served while others are eating and drinking all around is another goal. Fulfilling these goals requires the repeated experience of ordering and eating in a restaurant setting. However, with the huge portions served by many restaurants and the crazy calorie counts, a person like V who doesn't have the physical capacity to get her heart rate up for a sustained period and burn off some serious calories, can't handle all that high calorie food without weight concerns, sodium, cholesterol and saturated fat concerns. How to reconcile the benefit of the restaurant experience with the problem of less than healthy food and portion sizes is the challenge.
Weekly weight checks on the scale monitor V's progress up or down in relation to her ideal weight range. I communicate what this ideal healthy weight is to the support staff, stock the fridge and pantry with healthy choices, and train staff regarding appropriate portions to be served when V eats at home, with the emphasis on lean meats and lots of vegetables and fruits. I have researched the nutrition information on the restaurants that V frequently enjoys, such as Chipotle Grill, Baja Fresh (her two favorites) and Panera Bread. I have printed out the information and placed it in her daily report binder that goes with staff on community outings and I have discussed the better choices to order. We have made progress in the right direction with healthier food choices and increased physical activity. Overall, she sleeps well, has a healthy appetite and eats almost anything given to her, and has good energy. She rarely gets sick, her hair is soft and shiny and eyes and skin are clear, so I think we are doing well.
Weight was not an issue at all when she was a pre-adolescent, but when the teenage hormones escalated frustration related behaviors, doctors tried to treat V with some of the atypical anti-psychotics that have a related side effect of dramatic weight gain and increased appetite. Although she takes none of those medications now, the aftereffects remain from that time in her life when her beautiful body was so bloated from these medications that her skin stretched beyond it's elastic capabilities and she is left with stretch marks everywhere and a continuing challenge to maintain a healthy weight.
Dental Health
Dental health is another issue that is problematic. I have been fortunate to locate a very kind dentist who accepts medical assistance and who understands that the only way to do a thorough cleaning and dental exam, including the filling of any cavities is to sedate V at the hospital and do the work while she is asleep. Another dentist tried for years to treat her by restraining her with a papoose board, which may hold the body still, but does nothing to keep the head still. The result was years of ineffective treatment that left V with 14 cavities by the time her current dentist examined her and did xrays (which the other dentist could never do because V wouldn't hold still). While normal people can just make an appointment for a cleaning, we have to schedule an appointment at the hospital and visit the primary care doctor within a few days before that hospital appointment to make sure that she is healthy enough to be sedated. We have to make an early morning visit to the hospital before any food or medication is given. Believe me, this is not an easy process with V. I am anxiously watching what her wisdom teeth are doing because I remember vividly the excruciating pain of an impacted wisdom tooth, which is something V will have no way to tell me about if it happens to her.
The fact that many doctors and dentists don't accept medical assistance at all is something that people who are healthy and can work for a company that provides insurance or who can purchase private insurance if they are self employed never have to think about. For V, medical assistance is her only option. She can't get insurance through an employer and we can't purchase private insurance for her because of her seizure disorder and medical history. Social workers tell me that in some places disabled people go without dental care because none of the dentists where they live accept medical assistance. Dental infections and gum disease can effect the overall health of a person and shorten their lives. There should laws in this country that a person with a medical license must accept a certain number or percentage of patients with medical assistance. That is my opinion on that matter anyway.

The First Challenge: Health, part 3

Beyond scheduled aquatics lessons and horseback riding lessons, there are other opportunities for exercise in the course of community activities that have been a scheduled part of each day.
This is an area where adult life is very different for V than her school life was. In school, the location of the outing was chosen for her, as well as the start and finish time of the outing. For most of her years in school, other students were along for the outing. Flexibility consisted only of the choice to remain on the school bus rather than go into the destination.
Now, V is able to choose her outing if no appointment is scheduled, by choosing a picture symbol. She leaves the house when she is ready. When she gets to her destination, she is allowed to remain in the vehicle until she is ready to transition to the location and she is given the option of changing her mind and going elsewhere if she refuses to exit the vehicle. When she has had enough, she is able to return to the vehicle. Having so much choice in the way she spends her time has reduced her frustration and need to control her life through tantrums considerably. One of my biggest goals of adult programming has been to help V unlearn the need to fight for control over her time and activities.
Working with her natural interests, one community opportunity for exercise is the pedal boats at Seneca Creek State Park. During the summer season, V and her staff go the park at least once a week to rent a pedal boat for an hour and she helps to pedal around the lake. V loves boats of all kinds; sail boats, motor boats, pontoon boats, pedal boats and even floating docks. "Boat" is one of her few words. If there were a way to tie up a private pedal boat that we could access from spring to fall at a local park, I would get one for her with an awning to shade her from the beating summer sun, but unfortunately there isn't.
Another community opportunity for exercise is walking. V and her support staff walk all around the small local private zoos such as the Reston Zoo and the Catoctin Wildlife Preserve and Zoo. V loves to watch the animals and these outings give her exercise, sunshine and fresh air as well as an opportunity to learn about the animals. She walks on the trails of the local parks, and she walks around Lewis Orchard to shop for fresh fruits and vegetables. When the weather outside is not conducive to these activities, she exercises by walking the shopping malls and bowling at the local Bowl America. She actually gets a great deal more exercise in her adult program than she ever did as student in school.
Because V has unpredictable behavior than can be too much for one adult to safely manage, I have scheduled 2:1 staffing 5 hours each day between 10 a.m. and 3:00 p.m. when V can go out for community activities. If there is a cost for her staff to escort her, then that expense is reimbursable.
One of my biggest worries for V is that if she has pain, she hasn't learned to communicate that in any way. If I can't see physical symptoms of illness such as fever, cough, runny nose or visible injury, I don't know if she is ill or injured. Often I see a change in her behavior, such as lethargy or increased irritability, but don't always recognize it as an early sign of illness. I have not figured out a way to teach her how to communicate illness, pain, or a feeling of being too hot or too cold. She doesn't even perceive these things the way that others do. During a bath, she wants to turn the water as hot as it will go and run it over her hands. We often resort to turning off the water at the hot water heater, shutting off hot water flow to the entire house, to stop this behavior. I have not been able to locate a device that will control the temperature of the water flow from her bathtub and sink faucet yet, in spite of internet searches and request for help from various agency representatives. Some problems are hard to solve. It isn't enough to just turn the faucet off because she insists on turning it back on and this can lead to agitated behavior in the tub.
I digress, though. I hope that V's speech therapist can help me to figure out a way to teach V to communicate physical discomfort somehow, over time.