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.