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.