Deciding on the Best Way to Allocate Funds

Twice a year I have to think hard about this issue. Once, as the deadline approaches for the final budget modification, which must be submitted to DDA by the end of the 3rd quarter of the fiscal year, which is the end of March. The second time is when the annual update to the plan of care and budget has to be written.
I review how much of the budget has been spent for each item in the plan and how each of the items in the plan are benefiting V overall, compared the the time spent and the cost.
This year I am struggling with the issue of communication needs vs. physical needs. V is really making excellent progress with the speech therapy, which she receives one hour a week, and recently twice a week. The allocations for expenditures to meet her physical needs are not working out as well. The therapeutic riding lessons keep getting canceled because of various issues, and she is not receiving the benefit of nearly as many lessons in a year as I anticipated she would. So, I need to re-allocate that money to something else. In addition, the difficulties I have had finding and keeping someone to be an adapted aquatics instructor means that those funds have not been benefiting V either, and I need to get the position filled, or change the plan to re-allocate those funds as well. So, I am trying to decide if I should redirect the money to more speech therapy, since it is working so well, or to try to find another way to meet the need she has for improved balance, posture, and gross motor skills. The DDA restrictions on expenditures related to physical fitness make it more difficult to find alternatives to meet those needs for V. I have to make some decisions, justify those decisions in writing, work the numbers out, and do it soon. I shouldn't feel so much pressure to get it exactly right, as I can always submit a plan or budget modification later if I want to change things. Still, I take my responsibility to get this plan as close to meeting all of V's needs as I can very seriously. I should have a talk with the therapists and get some informed input to help me make my decision.

Services Not Covered Under New Directions

I attended a meeting for Support Brokers earlier this week to be fully informed as we approach the deadline for Annual Plan and Budget Updates for the new fiscal year.
Support Brokers were informed that DDA will be strictly enforcing the rules regarding services and supports that are not typically allowable under New Directions.
Some of the items on that list puzzle me.
Admission cost for staff to attend activities in the community with the disabled individual that they support is on the list. When a disabled individual has a monthly income of less than $700.00 from SSI, and no other source of financial support, it doesn't seem reasonable to expect that they can pay the admission cost for support staff to accompany them to the places that they want or need to go. Yet, without the support staff, V can not go anywhere. The staff transport her, speak for her, guide her and keep her safe. The community would be out of reach for V without the support of her staff. Some places allow support staff to enter for free, while charging admission only for V (which we pay for her). Other places, like the small private zoos that she enjoys walking in, will not allow free admission for support staff, so we buy season passes to keep the cost down, covering the cost for V, but receiving reimbursement for the cost of staff passes.
Included on the list of services not allowed are memberships to fitness centers, personal trainers, and nutritionists. All of these support the health of disabled people in a proactive way and prevent the health problems associated with obesity and inactivity. Cognitive and physical disabilities require specialized guidance to maintain a healthy level of physical activity. We do not use a nutritionist, but have used a fitness center to provide access to a pool year round for adapted aquatics, and V does require someone with certain expertise to support her physical fitness needs. Again, when a disabled individual receives only about $8,000 a year in income from SSI, and their family is already picking up the cost of housing, utilities, clothing, entertainment, medical copays, and food that the income can not possibly cover, how can they afford to pay for these services that support good health. If there are sufficient funds in the budget, why are these kind of supports not allowed?
Staff recruitment is now on the list of items not allowed. Since a Craigslist advertisement is $25.00, and a newspaper ad is $100.00 or more, if support staff are necessary, why could this necessary action to find staff not be covered? Agencies run advertisements in the local Gazette. I have seen the ads. I am sure that they pay for these ads from the state funds that they receive.
Maid service is not covered. I know for a fact that at least some group homes are professionally cleaned. Parents don't typically clean the living space of their adult children, and someone with a severe physical or cognitive impairment can not necessarily be expected to be able to do this for themselves. We have never used this service, but I still don't understand why it would be disallowed.
The last two examples seem to set a different standard for agencies vs those participants in New Directions, unless agencies are using funds that are not received from the state to pay for advertising and cleaning services for their offices and group homes. Do they pay for these things out of private donations? New Directions participants don't have the means to have fund-raising events the way agencies do. Whatever New Directions disallows for participants must come out of the pockets of family members.
To be fair, the list does state that consideration will be given on an individual basis if the service or support is justified as relating to the individual's disability and is habilitative in nature.

Aromatherapy to Treat Behavioral Issues?

Recently, I came across an article suggesting that certain essential oils may have an impact on certain behavioral issues that are commonly associated with ASD's. This is an excerpt from that article:

" Essential Oils and Autism

Essential oils can be effective in reducing some of the emotional and behavioral aspects of autism. Make essential oils a part of the daily routine to help keep everything balanced, calm and happy. Here are some examples:

* Peppermint essential oil is a neuro-stimulator, and helps with concentration. Use it in an aromatherapy diffuser or on cotton pads around the room.
* Neroli essential oil is known to be a very calming oil and is recommended for obsessive behaviors. Neroli is distilled from the flowers of the bitter orange tree and has a wonder full aroma. It can be added to a cream as a moisturizer, or as a perfume, but having it around will help with the obsessions.
* Roman chamomile essential oil has a calming effect and works well with hypersensitivity and aggression. It is particularly useful with in preventing tantrums and in easing transitions. Use in the bath or shower, inhale on a cotton ball or add to an aromatherapy diffuser.
* Sandalwood essential oil is another oil that can be used for obsessive and aggressive behaviors but it is also known for helping with emotional traumas. Use in an aromatherapy diffuser, bath or shower, or in a massage if tolerated. For people who are tactile defensive, add the essential oil to a cream and suggest they massage it into their own hands.


Read more at Suite101: Aromatherapy and Autism: Using Essential Oils to Reduce Symptoms of Autism http://autism-therapy.suite101.com/article.cfm/aromatherapy-and-autism#ixzz0iM4uSzoJ "

Has anyone tried this strategy and had any success with it? It seems harmless enough to try, and relatively inexpensive. I am thinking of giving it a shot and will write about any outcomes later.

No End to Learning

This morning was thrilling. Our speech therapist, Lauren, has been working each week on teaching V to use the Tech Speak voice output device to communicate by touching the pictures symbols on the device. A year ago, V thought the device was a toy and would touch random pictures to hear the words, but did not understand that it represented a way for her to talk. During speech therapy this week, she pressed the picture for "I want" and then the picture for "stickers" to form a complete sentence. Why is this a big deal? It is a big deal because, until now, V only used one word utterances,like a series of clues. She could not put two words together. Okay, it was in a speech therapy session, and that is great, by itself. But then, today, she did it again without prompting when the device was presented to her. So, she is transferring the skill of putting two words together to ask for something she wants as part of her day, instead of in a structured therapy session. For V, this is huge progress toward communicating more like the rest of us. She will be 23 years old next month. I remember, years ago, that professionals were trying to teach her this very same skill, and it didn't take. At that time, and in that situation, she was not receptive.
I look forward to continued progress and acquisition of skills for V over the many years ahead. The end of formal education for disabled individuals is an artificial boundary, just as it is for the rest of us. I believe it is important to continue to address areas of need with therapy after formal schooling ends and to make it part of any adult program. There is no deadline for learning and no point that it is too late to try for progress toward a better quality of life.

Paying your New Directions Support Staff

The recent back-to-back blizzards wreaked havoc with the work schedules of V's support staff, causing everyone to miss work because roads were unsafe and impassable. Fortunately, some of V's support staff had unused paid vacation days that they could request to get paid for the missed time. Some support staff thought that they should be paid for the missed time without using their paid vacation hours.
Well, here is the policy, as I have been informed regarding this matter.


There are no means through New Directions funding to pay any employee for unworked hours except vacation pay, and that is only if it is included in the ND plan.


Support staff wages are paid through Medicaid funding, and to falsify timesheets is a federal offense (Medicaid Fraud).

So, when you develop a plan of care and you want employees to be part of the plan, you can not offer sick leave. It is not allowed. You can not offer Administrative leave. There is no way to pay for snow days, other than paid vacation that has already been added to the budget and POC prior to the event.

If V's support staff miss time, I will allow them to trade shifts with another staff so that they can make up the lost income and I will offer them additional hours at a time when no other staffing is in place. I can not write on a time sheet that they were here if they were not.

Bonuses are allowed to be built into the POC/Budget, and I use these in place of health insurance, since some of my staff have insurance through their spouse. This way, there is a means to pay for private health insurance for those who need it, without paying for it for the staff who don't need it.

Be Part of the Research on ASD

As I was researching solutions to sleep disturbance issues for my last post, I came across the IAN website. I have copied the description of IAN.org from the website for your information and have pasted it below:
"
IAN, the Interactive Autism Network, was established in January 2006 at Kennedy Krieger Institute and is funded by a grant from Autism Speaks. IAN's goal is to facilitate research that will lead to advancements in understanding and treating autism spectrum disorders (ASDs). To accomplish this goal, we created the IAN Community and IAN Research.
IAN Community

The IAN Community is an online environment designed to act as an inviting library and meeting place where everyone concerned with autism spectrum disorders can learn more about autism research. Everyone can participate and benefit from the IAN Community.

Our goal is to help you:

* Understand the research process
* Keep up with the latest research findings, news, and events
* Understand the value of participating in autism research
* Influence the direction of research "

There. If I would summarize what I have found on the website: It provides descriptions of research studies that are currently being conducted throughout the country, that are still recruiting participants. It publishes the results of completed studies. It allows users to participate in online surveys about autism or ASD's. There is a wealth of information here and an opportunity to be counted in the research if you want to be. I think it is worth checking out and I have registered for it. I have learned from reading research results on IAN that my daughter is typical of girls with ASD's in that 1. she was diagnosed before 12 mos of age, 2. She has cognitive impairment, and 3. She has a seizure disorder. I did not know that these features are far more prevalent in girls that have an ASD diagnosis than in boys. So, I learned something.
I also learned that Vanderbilt is doing a study on sleep disturbance in people with ASD's, and you can read about it or email the researcher with questions from the report on the IAN website.
To visit the IAN website, copy and paste this URL:
http://www.iancommunity.org

Sleepless Nights

I wonder if there is a parent who has a child with an ASD who has not lost sleep at night because of the irregular sleep patterns of their child. I have certainly been through the problem and know of several other families who still struggle with sleepless nights. If you do an internet search for "regulating sleep in autistic children" you will find many links with lots of suggestions that may or may not solve your problem. One link suggests that giving melatonin to the individual with sleep problems might help. To read more about that copy and paste this url: http://sleepeducation.blogspot.com/2009/04/melatonin-improves-sleep-problems-in.html
As of June 2008, Baylor College of Medicine began conducting a clinical trial on this very problem. I have not found posted results and I do not know if the study has concluded yet. It may provide some answers. To read about it copy and paste this url: http://clinicaltrials.gov/ct2/show/NCT00691080
Someone who was clearly desperate for a good night's sleep has even invented a bed to safely contain someone who cannot be awake and unsupervised safely at night. More information about this is found at http://noahsworldllc.com/
Another site I found suggests using a weighted blanket or white noise. To read this article, copy and paste this url: http://autismaspergerssyndrome.suite101.com/article.cfm/autism_and_sleep_disorders
That same article talks about doing heavy work activities to help improve sleep, and provides a link to an explanation of what "Heavy Work Activities" are.
There are many ideas available that I never knew about or tried. I would be interested in feedback from anyone who tries any of these about the effectiveness.
Any shared stories of success might help another family, so please post comments about any solutions that you have found to this problem.
When I had this problem, we turned the doorknob around so that the lock faced the hall instead of the bedroom, and locked the door at night. For two years, V would knock on the door every 2 hours throughout the night, as a result of a medication change. We tried room darkening shades and the doctor recommendation of benadryl at bedtime, without success. Our behavior analyst suggested that we extinguish the behavior by ignoring the knocking instead of getting up to put V back to bed. She suggested moving V's bed to a location of the house that would make it easier to do this. We moved V's bed to her playroom in the basement and set up a baby monitor to listen for any trouble at night. Unless she was distressed, we ignored the knocking. We turned off the fuse providing power to her lights so that she could not brighten the room when she got up. The result was that she would go back to bed when no one responded and the knocking became less and less frequent until finally she was sleeping through the night again, and so were we. She likes having her bed in her playroom, where she can curl up and take a nap after her community outings if she is tired. The solution was successful and lasting for us.