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!