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!