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!

The Pros and the Cons

V lives with us at home. After years of talking to people who had worked in or supervised group homes for people with developmental disabilities, I learned that the care can be great or poor, depending on the staff of the home at any given time. I learned about incidents of injuries to clients that went unreported and untreated. I learned of drugs that were brought into the group homes by caregivers and clients who were taken to parties where drugs were present. With the knowledge that my daughter can be aggressive and destructive when she is agitated, and that she has no ability to communicate that someone has abused or neglected her, she is too vulnerable to be in a group home. While she lives with me, I can monitor her care and health closely. I am able to advertise, interview, train and supervise her personal support staff myself. I am in control of the quality of the food that she consumes. I can provide safe transportation for her in a privately owned and maintained vehicle. I can give her love and affection every day. I feel that this is the healthiest and safest environment for her, being part of a family with parents and pets. I can choose her doctors, activities, service providers and know their qualifications and performance.

There are many advantages to V and peace of mind about her welfare for me. There is also a great deal more responsibility for a parent than they would have otherwise. It is my responsibility to locate staff and service providers, which can be difficult and time consuming. It is my responsibility to complete time sheets for staff and payment forms for vendors at least once every 2 weeks. Since food, clothing, medical copays and entertainment for V are not provided by the state under New Directions, these things come out of family budget. While mileage can be reimbursed for transportation, the cost of the vehicle is not covered and that is also paid from out family budget. Vacations or overnights away from home for my husband and I take a lot more planning and preparation because overnight care has to be arranged and written directions left for staff. I have to personally cover staffing shortages or absences , or make arrangements for other staff to cover this shift. It is like running a small agency from my home, coordinating schedules and training for this crew that my daughter requires.

One of the most difficult things about this arrangement is that this program is limited to residents of Maryland. If I want to move to another state, I give up everything that I have put in place for V and have to navigate an entirely new system, and likely remain on a waiting list for services for quite some time. My husband's entire family is in Virginia and my entire extended family is in Virginia, but moving nearer to them is not an option because there is no self directed program in that state. I don't know which states may have something similar to this kind of program. Even within my state, moving very far would mean finding and training a whole new staff, and finding new vendors. So, taking on this responsibility means feeling restricted about where you can live and when you can leave home even for short periods. For me, I accept the down side of all this because I love my daughter and her happy life is worth it. My husband is a stepfather who did not meet my daughter until she was 15 years old, and he is a special man to accept all of these restrictions on his life out of love for me.

Why we chose a self directed program

When V was in school, her psychologist and teachers described her as self directed. She had her own ideas about how she should be spending her time and frequently those ideas did not mesh with the schedule that her teachers had in mind for her. There seemed to be such a strong need to be in control of where, when and for how long she would participate in a particular activity. Although V had little in the way of communication skills, her tantrum and refusal to comply with directions seemed to scream, "Stop telling me what to do every minute of my day! It's my life and I want a say in it!"
How can someone with about 20 words, no handwriting, no sign language and and minimal working knowledge of picture symbols have a say in their life? She shows her caregivers what she likes by her smiles, laughter and willing participation. She shows us what she doesn't like by refusing to participate. She tells us she has had enough by walking away. She needs someone in her life to care enough about what she wants to observe and report on those things that give her life meaning and joy. That person is me, her mother.
When school was about to come to an end, when she was 20 years old, we had to choose between various traditional programs that would include supported employment and a group home, or a pilot program offered by the state of Maryland called The New Directions Waiver. The New Directions Waiver allowed disabled people in the state to direct their own adult program using the same budget that the traditional agencies would receive. I was advised that V's non-compliant nature made her a poor fit for those traditional programs, but that we had this great alternative. So, here we are, and V has a self directed life now.