Thankful at Thanksgiving

On a bad day, it is easy to get hung up on the little things that don't work as well as I would like. I have to keep reminding myself that in the Big Picture, this adult program is working fabulously.
The supervising nurse visited on Saturday. She said V's blood pressure was 110/60. When the dental cleaning was done under general anesthesia 3 months ago, the nurse commented on how fast V's blood oxygen returned to normal. She was impressed. I see V's clothes fitting more loosely now than 6 months ago, in a good way, and I know that all of these things are the result of all the exercise that V is getting each day when she goes into the community. I see that she has a great appetite, and sleeps through the night. I see that she is smiling so much more now than a year ago and seems so much more peaceful. What more can a parent want than health and happiness for their child. I am thankful this week for the ability to see that V is well-fed with nutritious home-cooked food, well-cared for by dentists, nurses, therapists, doctors and support staff, and well-loved by her family. The behavior analyst commented on the dramatic improvement in V's quality of life over the past year during her most recent visit. V's support staff who have worked with her for the past 4 years commented recently on how much calmer and happier V is now than when she was in school. Ironically, I see more progress in skills and cooperation with therapists now than was ever reported within the structure of school.
Why is this the case? Why can our speech therapist get one hour of cooperative work with V now, when V would rarely work more than 15 minutes with a speech therapist at school? Is it because the work is now done in V's home and in the community? Is it because the current therapist has discovered what re-inforcers work or what activities V enjoys doing during sessions or just a good personality match? I don't know. Maybe the success is the result of all of these things working together.
What we know now, for sure, is that engaging in a power struggle with V does not work, but patience does. Demands do not work, but negotiation does. A rigid schedule does not work, but having flexibility does work. Pro-active anticipation of problems can prevent a lot of wasted time later spent resolving problems. When V is calm and happy, she learns and retains her knowledge and is able to show what she knows.
We have come a long way, but there is still lots of room for growth. I am thankful for the opportunity to be in the front row to witness these changes for the better and to be a part of them.

Disability Scoop Article today....

Visit this link to read the article today; http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/
This article says that a study of mothers with autistic children suffer from the same chronic stress levels as a combat soldier. Can you relate to that?
This article says that mothers of autistic adolescents and young adults are interrupted at work on average once out of every 4 days, as compared to once out of every 10 days for mothers of kids without disabilities. Well, I can easily see that one, for sure!
I recall one year when I taught at an elementary school and would receive frequent mid-day calls from V's school, asking me to come take her home because she had "thrown up". V wasn't sick when this happened, she was upset. Something at school would set off a tantrum. Crying would cause sinus drainage, that would set off coughing, that would set off her gag reflex and whatever was in her stomach would come up. When I took her home and missed work following these incidents, she would be fine the rest of the day. She had no virus, no fever, and no further incidents of stomach upset the rest of the day. I learned to ask the school nurse if her vomit had followed upon the heels of a tantrum, and if it had I asked them to allow her rest, change her clothes and then let her return to class if she had no further symptoms. I was a single mom, I had a job to do, and coming to take V home to play was reinforcing the behavior of vomiting after tantrums, a habit I did not want to encourage for obvious reasons. I received resistance to my request and pressure to come and take her home each time. I held firm, insisting that if she had no fever, no other symptoms of illness and no further stomach upset, there was no reason to take her out of school. The incidents declined in frequency and eventually were no longer a problem.
It is hard to be a reliable employee if you are a parent of a child, or dependent adult, with health or emotional problems. I eventually left my employment when the inability of support staff to get her on a school bus in the morning resulted in frequent morning calls to my school asking me to leave my classroom in the middle of teaching a lesson and come take V to school after the bus left without her. My daughter's demands on my time at work were unfair to my employer, my students, and caused me stress because of the conflict between meeting my daughter's needs and meeting my employer's needs.
As a result, I have sacrificed a good salary and benefits to be available to give my daughter the best possible care. Our level of debt is higher and savings are lower as a result. I only had the choice because I remarried. I don't know what I would have done without my husband's support. I think this is why many disabled adolescents end up in residential care instead of with their families. These are heartbreaking choices.

We are not alone with these dilemmas. These problems are receiving more attention now and, maybe will be followed by more support, eventually. I don't think that will happen until our economy has stabilized, and until then supports may actually be lost because of funding shortages. Hold on if you are struggling with these issues. Things get worse but then they do get better again.

Hard times for Maryland

Local agencies that provide services to disabled residents with funding from DDA have taken a 2 percent cut in funding recently. One agency advises us that as a result they are consolidating group homes to reduce costs, and cutting out mid-day transportation to supported employment for clients, among many other cost cutting measures. Will a 2 percent cut to New Directions budgets soon follow? I would not be surprised and I am thinking about where I will reduce services for V if this should happen.
Further, the state unemployment fund is depleted because so many citizens have been on unemployment benefits for so long through this recession. The consequence is that my husband, who is a small business owner in Maryland, just received a notice from the state that his contribution to the unemployment fund for his one employee will be increased 6 times his current rate. If his contribution for his one employee is going to go from 200.00 a year to 1,000 or more, than I am imagining the impact of this on V's budget, as her caregivers are 5 employees that are paid from her DDA budget. State and federal taxes, and unemployment contributions are paid for these employees from her DDA budget as well. So, if we currently pay about 1,000 in unemployment contributions for these 5 employees, and we have to pay 6 times as much in the coming year, that will further reduce funds from the budget that are available to pay for other services that V currently receives. I am going to need to discuss this with our fiscal management agency.
For those, like V, who are too disabled to work and rely on SSI for all income, there was no cost of living increase this year from last.
The recession is hitting disability services here in Maryland, as it probably is all over the country.

No pre-payments allowed by DDA

So, after getting prompt reimbursements for a year for the cost of a 10-lesson prepaid package at the stables for therapeutic horseback riding, I have been informed by the fiscal management agency and a DDA representative that this was not permitted and can not continue. The agency is worried that if any services are pre-paid, then if the services are not actually received during the fiscal year, that a refund will be paid to the person who was re-imbursed. I asked DDA, what if you pay the vendor directly and then any unused lessons will be re-imbursed directly to DDA via the fiscal management agency? The answer is still no. I don't really understand that, but that is the way it is.
So, the result of this ruling for us is that I can continue to pay for the pre-paid lesson packages and get reimbursed for the cost after the lessons are completed, or I can pay a higher price per lesson and pay as each lesson is taken, filing for reimbursements much more frequently than before. Since it would cost significantly more to pay as we go, using much more money from the budget than anticipated, I will carry the cost of the pre-paid lessons for my daughter, but I can see that this policy would either increase the cost of these services or create a financial hardship for a family that has fewer resources than we have to do the same.

Anyway, as you budget for services, realize that you can not take advantage of any cost savings offered by prepayment unless you can wait until all of those prepaid services have been used to apply for re-imbursements. There is no case-by-case considerations or exceptions. It is a blanket policy.

Make It Your Own

The joy of New Directions is the ability to individualize the program for the client. While V has a budget for art supplies because that is calming for her, another client has a budget for music therapy because music is "his thing". I would like to post more about the Music Therapy option for those readers who are interested in that option. That client also enjoys participating in group dance classes through a therapeutic recreation program.
What are your limitations? Well, if it maintains or increases current skills, health, or safety then it is a possibility to include that activity or resource in the Plan of Care and Budget. If the resource or activity maintains or improves access to community resources, maintains or improves behavior that impacts socialization and learning then it is possible to include that in the POC/ budget.
I encourage readers to include ideas that you have found that meet these guidelines in your comments. Is the client capable of taking classes or having a small business with support? Then those are options.
The biggest challenge to self direction is finding providers of services, so if you have found a provider that will take on additional clients, then please post some information about them for other readers and I will create a link. We can help each other by sharing information, experience and knowledge so that each of us won't have to re-invent the wheel, so to speak.

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.