Resources By State

I just added a link to State by State Resources from Autism Speaks. I can't personally vouch for any of the service providers, and it is not a comprehensive list. V uses dentists, doctors and specialists that are not on the list. My friend uses a music therapist that is not on the list.
There was already a link to a list of resources provided by Autism Pathfinders, but each link offers different resources. If you don't find what you need in one list, check the other. I wish there was one comprehensive list, but I have not found that yet. An individual does not have to be autistic to benefit from these community resources, so whatever the disability, if you need support services, a doctor, or a specialist, check the lists.
If anyone has found a resource in the community that they would like to make others aware of, please post the information in a comment, and I will add a post to make others aware.

Solving a Bath Time Problem

For years, bath time has been problematic. First, the transition into the bathroom to take a bath was tricky. If V is involved in an enjoyable activity, she doesn't want to stop to go take a bath. So, first, a natural break in the activity at hand needs to occur to increase the chance of a smooth transition. If she is watching t.v., it can be the end of a show. If she is coloring, it can be the point that she puts down the crayons. Second, she becomes obsessed with running the water, as hot as it will go, far beyond the point that you would want to send water pouring down the drain to avoid a spill over onto the floor, and so hot that her skin turns bright red. What is a painful temperature to me, is not painful to her. This obsession with flowing hot water has led to many a conflict in the tub. V turns the faucet all the way to the hottest level, and I (or the caregiver) turn it back to a cooler temperature or I turn it off because the tub is full and the bath is over. Then, V turns it back on, again, as hot as it will go. Back and forth it goes, until she becomes frustrated and agitated, yelling and splashing water onto the floor and whoever is present. This is not fun for anyone. When the obsession begins, no cajoling, prompting, or demanding that the water stay off will stop it. No tempting treats will consistently overwhelm the desire for the flowing hot water. No behavior management strategy has worked to solve this dilemma. So, we have resorted to a home modification solution.
A panel has been installed in the wall of the bathroom used by V, that allows a caregiver to shut off the hot or cold water supply to the tub, or both hot and cold, by turning a valve. It can not be reached from inside the tub. For the first time in years, we don't have to go shut the hot water off at the hot water heater on the other side of the house. There is no need to leave V alone in the bathroom to interrupt the hot water flow. Now, only the water flow to the tub is interrupted, instead of shutting off the hot water supply to the whole house and interfering with the dishwasher or laundry as before. We used the new system last night for the first time. The caregiver said, "It's the best thing since sliced bread!"
I am thrilled to have a solution to this previously unsolvable problem. I am posting a photo of this panel for anyone who shares this problem. For additional information about how to to this, contact me and I will put you in touch with the gentleman who did the work. Anyone with plumbing experience could do this.

The Tme of the Day Makes a Difference

I have observed an interesting pattern in V's services. If the speech therapist comes at 10:00 a.m. for a session, not much work gets done, but if she comes at 4:00 p.m., she can get a solid hour of work from V. When the occupational therapist came for a visit the very first time, over a year ago, at 10:00 am, V had the biggest tantrum I had seen in years. Yet, when the same OT came for 2 visits recently at 5:00 p.m., she was received peacefully and with cooperation and interest.
Now, I have specialist services scheduled at 4 or 5 in the afternoon on Monday, Tuesday, and Wednesday because I can see that V is not receptive to doing work in the morning, but is interested and willing to participate later in the day. It makes me look back and wonder if this is not part of the problem that we had with resistance to school activities. I now see that she is at her best when the school day would have been over.
It is an observation that has some interesting implications for service delivery, and worth looking at as we continue to schedule activities.
As you plan a program of services, remain flexible in your scheduling. If it doesn't work at one time of the day, try another time and see if that makes a difference.

Freeze on New Directions Applicants

Rumors were floating among parents I know. I heard that no new applications for New Directions Waiver services are being accepted at this time. I wondered if the New Directions program was at risk. So, I wrote an email to my resource coordinator, Lauretta Reffell, to ask for the scoop.
New Directions is not in danger of going away, she says. This waiver has a limited number of slots and they are all currently full, so no new applications are being accepted at this time. Those families or individuals who are currently served by the Community Pathways model must remain in that situation, even if they are not satisfied with their services, until clients leave New Directions and create openings or until DDA decides to increase the number of slots for the waiver.
Why does New Directions have a limited number of slots? I don't know the answer to that question. It could be that new applications require a lot of support from DDA staff to get the plan of care and budget set up. Many of these documents take months to create and involve many revisions until they are just right. With state budgets so stretched, I am sure that DDA can't hire any additional staff to carry the weight of such time-consuming clients. It could be that the state doesn't want to take too much business away from established agencies that currently provide services to clients with less direct DDA support and hand-holding. I am guessing. If I get an answer to the question from DDA, I will post it.
I would like to see this option expand and be available to anyone who wants it. For that to happen, DDA would need to contract out the supports required to set up the plan of care and budget, and have the applicant pay for the cost from their annual budget, rather than hire permanent DDA employees to support each applicant. That could keep the cost down to the state and the work load down for the DDA staff. What about the loss of clients to established agencies? I hope that at some point, New Directions clients will have the option of purchasing just the services that they want and need from established agencies out of their New Directions budgets, which would be something of a crossover between Community Pathways and New Directions Waivers. So far, I don't know of any established agencies that are open to this kind of arrangement. I asked CSAAC director, Ian Paragol, about this possibility by phone 2 years ago, and he said he would look into it, but never got back to me or responded to letters asking what he was able to find out.
If self direction is what you want, then you will need to let DDA know that you would like to see the number of slots for the New Directions Waiver increased, or it may not be an option when you want it.
If you are not in Maryland and your state does not have anything similar to this, click on the Maryland DDA link and go to New Directions Waiver. Send the program description to your state agency for disability services and ask for this option. Get other individuals and families you know to sign the request. The self directed option is GREAT and everyone should have it if they want it!

Exciting New Year

V is 1.5 years into her New Directions Waiver services and I have finally been successful in adding an occupational therapist to the support team who has experience with the population of clients with developmental disabilities. Nyle MacFarlane of Blue Nyle Therapy Services is beginning one hour a week with V at our home, for now. She hopes that V can eventually access the clinic where the sensory equipment is available. Transitions, being what they are for V, will make this a future goal, after a positive relationship between V and therapist has been established.
This week we also have a veteran special education teacher joining the support team,who will also visit one hour a week to help V increase her knowledge and skills.
The only piece of our plan lacking is a replacement for the adapted aquatics instructor that we lost in July. I am still working on that, but remain hopeful.
The new staff additions have meant that this has been a busy week for me, with meetings and paperwork, faxes, phone calls and emails. This is standard when there is any change in the team.
I am excited and also anxious. I see possibility for growth for V, but know that it will be an adjustment to have 2 additional days a week to work with 2 new people and I wonder how she will respond. I hope she will like it. She is so lucky to have such qualified supports. She is getting more services now than when she was in school!
As I posted before, it has been really difficult to fill these positions. I first met with Nyle more than a year ago. Her schedule was too packed to fit V in at the time, but every couple of months I shot her an email, touching base, asking if her schedule had any new slots or if she knew anyone who might be qualified and interested in the position. Finally, the answer was yes. For the teacher, I emailed someone who works as an assistant in a nearby special education center and asked if they knew anyone who might be interested in working with V. The response came the same day and that arrangement was confirmed within 2 days.
So, as difficult as it can be to fill positions with good people, over all I have had more success by asking people I know for references than by advertising.
If you need staff, look up your local special education centers, fax or email what you need to the main office, human resources or directly to staff emails that are often listed on the website of the organization. Ask them to post your need on a staff lounge bulletin board or to share it with anyone who might be good in the position. Secretaries and human resource people are often sympathetic and happy to share your request with staff. I found two of my personal support staff in this manner, and they brought on the other staff from people that they knew who have similar qualifications.

The Winter Doldrums

It is cold outside! The high temps all week will be in the low 30's. V doesn't like these frosty days and neither do her support staff. The zoos that she enjoys so much are closed for the season. The horseback riding lessons get cancelled often because it is too cold or because V does not like riding indoors on rainy days. No one is interested in walking in the parks in the frigid weather.
As I documented mileage for reimbursement, I noticed a lot of trips to the mall for community outings. The mall is a nice warm place to walk and get some exercise and there is certainly a lot to look at and eat there. However, I was thinking that too many trips to the mall between now and the warmer temps of Spring could get stale and boring. Of course we still have the Indoor swim center, the library, the bowling alley, the movie theater and various restaurants, but what else can we do?
We live in the suburbs and there are lots of businesses that can help V learn more about the community that she lives in and how things work. Time to get a little creative.
Where could V go, close to home, where she hasn't been before? Something new and interesting.
I began pulling up online photos of florists. There is one close to our home. I printed out directions to it for support staff. I pulled up photos of floral arrangements for various occasions; birthdays, weddings, funerals, new baby, and get well. I printed them out and cut them up. The next morning I helped the support staff do a gluing activity with V, using the florist pictures, as we talked about what the different flower arrangements were for, and what a florist does. Afterward, I asked V, "Do you want to go see the flowers at the florist?" She responded, "Yeah." So, a while later, off she went with her staff, to the florist. I wondered all day how the outing would go. V came home with an african violet that she purchased at the florist. Her staff reported that she was very interested in the flowers, the posters on the wall, and the ribbons the florist used. It was a successful outing and now V knows what a florist shop is. The staff said that they tried to go to the post office with her, but it was crowded and she got upset there. Well, I suggested that some preparation before visiting a new destination would be helpful next time, the way we prepared for the florist in advance.
I spoke with the staff about other possible community destinations that might be interesting; maybe a bakery, maybe the dry cleaners, the pharmacy, NTW or an automotive supply store, or Krispy Kreme to watch the donuts get made. Perhaps a local dance studio would let her watch a class. Perhaps a visit to see a fire truck could be arranged. There a lots of interesting places in D.C. or Baltimore to visit, but parking close enough to those attractions is a problem in those places.
I think, with some imagination and preparation, we could make this winter interesting instead of routine and introduce some new experiences. As always, ideas are welcome from readers.