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.

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

When I sat down to write a plan of care for V's adult life, my first concern was maintaining her optimal health so that her quality of life would not be compromised.
One obstacle to this goal was V's tendency to obsess over food and her inability to understand the importance of healthful eating habits and healthy weight. V loves potatoes, rice, ice cream, and many other things that when eaten to excess, can cause problems in this area. At home, she will keep returning to the refrigerator or pantry again and again, as long as one of these highly preferred foods are visible, until she has eaten it all, and will become agitated if told that she can't have more. For me, it means that I rarely buy ice cream to have at home and if I buy sweets or chips, they have to be hidden. Hiding leftover mashed potatoes or rice is trickier.
Community outings present further food related challenges. There seems to be nowhere to go that doesn't offer food. The bowling alley always has a snack bar open. The zoo requires that everyone pass through the gift shop where chips, soda and ice cream are for sale. The state parks have vending machines in the boat house where sodas can be purchased when she goes for a pedal boat ride. The concessions at the movie theater are unavoidable at times. Even the gym has root beer and energy bars for sale at the check in desk. The only places I can think of where food is not an issue is the library and the outdoor playgrounds.
Once, we took V to the Petsmart to buy dog food, and she became convinced that a dog treat at the checkout counter was a candy bar. The only way to avoid a full blown tantrum was to let her see for herself by taking a bite, after failing to convince her it was not a candy bar, but a dog treat. The look on her face as she handed it back was proof that she finally figured out that I was telling her the truth.
One way to address the issue of healthy weight was to build in opportunities for exercise in her plan of care. Physical activities are limited for V by her hip dysplasia which causes a severely pidgeon toed gait and by her impaired motor skills.
Adapted Aquatics Instruction
I remembered how much she had enjoyed playing in the pool as she was growing up and how she enjoyed her weekly adapted aquatics lessons at Longview School, and so Adapted Aquatics lessons became part of her plan of care. Who would provide the instruction and what it would cost were two questions that I had no answer for at first. I had hoped that the instructor at Longview School or Stephen Knolls School would be willing to work with V after school or on the weekend, but their schedules were too busy. I found adapted aquatics instruction in Texas online and used the hourly rate that was posted there to create a budget and hoped that it would be acceptable to whoever I eventually found to provide the instruction here. In the end, it took a year of searching the internet, sending emails, and making phone calls before I finally found someone qualified and interested in the position.
A facility where the instruction could take place was another requirement. I selected the healthtrax fitness center, which had a heated lap pool, and an even warmer therapy pool. The management agreed to allow 2 personal support staff to accompany V on her visits at no charge, as well as her adapted aquatics instructor. The advantage of this location is that there are other opportunities for exercise if V is not in the mood to get in the water on any given day. Recently, she has been learning to use the stationary bike.
... to be continued.

The Framework

Self direction for V means having the support of a lot of people.
First, there is the psychiatrist who prescribes the medications that manage seizure activity and anxiety. V is very fortunate to be treated at the Kennedy Krieger Institute in Baltimore, MD. I can't speak highly enough about the work that is done there.
Then, because medication has to be administered by personal support staff, there is a state requirement that a supervising nurse oversee the medication records that are maintained and that she monitor the overall health of the client with 45 day visits. V's nurse trained her caregivers to be certified med techs, a 20 hour program, so that they would be in compliance with DDA requirements for any staff that administer medication. The state requires that anyone who provides direct care also have current CPR and First Aid certificates.
Five of V's 6 personal support staff have completed CNA (certified nursing assistant) training. These people are responsible for preparing meals, helping with all grooming and hygiene needs, transporting V to community activities, setting up stimulating activities at home and maintaining detailed records about her day. The state requires background checks for all staff and I require driving records for anyone who drives V anywhere.
V has a Behavior Analyst who supports family and staff by reviewing daily records for patterns or trends in her aggressive or destructive behaviors, and provides training to family and staff for ways to safely handle and minimize these incidents. Luckily for us, her analyst at Matthews Center for Visual Learning had 2 years of experience with V and was willing to continue to work with her privately.
The Speech Therapist took a year to find. There is such a shortage of people with this training and they are in such demand that most are too busy to take on private clients and few have the experience of working with a population with V's particular needs. Because the private school that V attended during her last two years was unable to locate a Speech Therapist for their students, our county agreed to send someone on staff to provide some compensatory services. My hope was that this person would be willing to continue privately when county services were completed and my hopes have been fulfilled in this matter. V requires so much help learning to express her needs and wants and her staff and I need help learning how to assist her that these services are really critical to her continued progress.
Another service provider who was extremely difficult to find was someone to provide Adapted Aquatics instruction. After a year of searching, I finally found someone at the University of Maryland that I am extremely happy with. Her rapport with V was immediate and the support staff really enjoy working with her. V has access to the Indoor Swim Center and also the lap pool and therapy pool at Healthtrax Fitness and Wellness. At the fitness center, she can pedal the stationary bike if she doesn't want to go into the pool. The instructor is experienced in adapted P.E. and Special Olympics, so she is able to support an exercise program in or out of the pool.
Therapeutic Horseback riding was already in place before adult services began, but I appreciate that Circle of Hope Therapeutic Riding has been so patient and flexible with V. Three of her personal support staff have completed the volunteer training at COHTR so that they could walk beside the horse as V rides. It has really made a difference in her willingness to get on the horse and to remain on the horse for a longer period of time.
I came pretty close to finding an Occupational Therapist to assist V with her self care skills that are difficult due to motor skill impairments and cognitive impairments. That position is not yet filled. Setting up these services takes lots of time and effort, and is the hardest part of self direction.
As my stepfather says, V uses a lot of resources. Although I represent her as her legal guardian and her Support Broker, V is the employer of record. Kind of funny!
Under New Directions, I had to choose a Fiscal Management Agency to do all the tax forms and payroll. I selected The ARC of the Central Chesapeake Region for my FMA, and Amy Leonard has been great to work with. My phone calls and emails are answered almost immediately and she is always helpful. I never touch the money, it goes directly to the staff and service providers in the form of checks issued by the ARC. I have to figure out the rates of pay to offer and then stay within the budget provided by the state. I guess I am learning valuable skills in the process.
Since every person using the New Directions Waiver has different needs, their plan of care is different from V's. There is a Resource Coordinator assigned to the case by DDA, who is nice and as helpful as she can be, but with so many clients who all have different needs and interests, it can be hard to answer questions about where to find service providers. We have made a lot of progress in our first 9 months!

The Pros and the Cons

V lives with us at home. After years of talking to people who had worked in or supervised group homes for people with developmental disabilities, I learned that the care can be great or poor, depending on the staff of the home at any given time. I learned about incidents of injuries to clients that went unreported and untreated. I learned of drugs that were brought into the group homes by caregivers and clients who were taken to parties where drugs were present. With the knowledge that my daughter can be aggressive and destructive when she is agitated, and that she has no ability to communicate that someone has abused or neglected her, she is too vulnerable to be in a group home. While she lives with me, I can monitor her care and health closely. I am able to advertise, interview, train and supervise her personal support staff myself. I am in control of the quality of the food that she consumes. I can provide safe transportation for her in a privately owned and maintained vehicle. I can give her love and affection every day. I feel that this is the healthiest and safest environment for her, being part of a family with parents and pets. I can choose her doctors, activities, service providers and know their qualifications and performance.

There are many advantages to V and peace of mind about her welfare for me. There is also a great deal more responsibility for a parent than they would have otherwise. It is my responsibility to locate staff and service providers, which can be difficult and time consuming. It is my responsibility to complete time sheets for staff and payment forms for vendors at least once every 2 weeks. Since food, clothing, medical copays and entertainment for V are not provided by the state under New Directions, these things come out of family budget. While mileage can be reimbursed for transportation, the cost of the vehicle is not covered and that is also paid from out family budget. Vacations or overnights away from home for my husband and I take a lot more planning and preparation because overnight care has to be arranged and written directions left for staff. I have to personally cover staffing shortages or absences , or make arrangements for other staff to cover this shift. It is like running a small agency from my home, coordinating schedules and training for this crew that my daughter requires.

One of the most difficult things about this arrangement is that this program is limited to residents of Maryland. If I want to move to another state, I give up everything that I have put in place for V and have to navigate an entirely new system, and likely remain on a waiting list for services for quite some time. My husband's entire family is in Virginia and my entire extended family is in Virginia, but moving nearer to them is not an option because there is no self directed program in that state. I don't know which states may have something similar to this kind of program. Even within my state, moving very far would mean finding and training a whole new staff, and finding new vendors. So, taking on this responsibility means feeling restricted about where you can live and when you can leave home even for short periods. For me, I accept the down side of all this because I love my daughter and her happy life is worth it. My husband is a stepfather who did not meet my daughter until she was 15 years old, and he is a special man to accept all of these restrictions on his life out of love for me.

Why we chose a self directed program

When V was in school, her psychologist and teachers described her as self directed. She had her own ideas about how she should be spending her time and frequently those ideas did not mesh with the schedule that her teachers had in mind for her. There seemed to be such a strong need to be in control of where, when and for how long she would participate in a particular activity. Although V had little in the way of communication skills, her tantrum and refusal to comply with directions seemed to scream, "Stop telling me what to do every minute of my day! It's my life and I want a say in it!"
How can someone with about 20 words, no handwriting, no sign language and and minimal working knowledge of picture symbols have a say in their life? She shows her caregivers what she likes by her smiles, laughter and willing participation. She shows us what she doesn't like by refusing to participate. She tells us she has had enough by walking away. She needs someone in her life to care enough about what she wants to observe and report on those things that give her life meaning and joy. That person is me, her mother.
When school was about to come to an end, when she was 20 years old, we had to choose between various traditional programs that would include supported employment and a group home, or a pilot program offered by the state of Maryland called The New Directions Waiver. The New Directions Waiver allowed disabled people in the state to direct their own adult program using the same budget that the traditional agencies would receive. I was advised that V's non-compliant nature made her a poor fit for those traditional programs, but that we had this great alternative. So, here we are, and V has a self directed life now.