My son has chosen Vanguard Landing and has taken significant steps to make his dream a reality. He has taken a job in Virginia Beach near, but in no way associated with, Vanguard Landing. He saved money from this and previous jobs in an Able account for several years and purchased his own furniture, which has been delivered to his townhome at Vanguard Landing. His gift wish lists for the last couple of years have been populated with items he wants to make his vision a reality in his new home. We have made a cookbook so that he can create favorite meals in his full kitchen to share with his friends and family. He and I designed and created a set of dishes at a local pottery studio to coordinate with his chosen theme. He is ready to live in the home he has chosen, but is unable to because he cannot use his Medicaid waiver.
He currently lives in a group home and uses a Medicaid waiver to pay for those services. The group home is owned and managed by a person I highly respect. The home is spotlessly clean and care is taken to serve fresh, nutritious meals. My son participates in community engagement on the weekdays he does not work. Having looked at many options with his case manager, my son knows that his current group home is the best available but, he desperately wants a change.
He has very little ability to make immediate choices in a group home. He does not choose his meals; they are chosen and prepared for him. He does not choose his community engagement activities or the other participants in his group; staff chooses all activities and the groups of participants are assigned. If he wants to stay home from activities for reasons other than illness, he must give several days’ notice so that staffing can be arranged. He lives in a neighborhood where he knows no one outside his group home. There are no organized neighborhood social events that he can attend. Staff is responsible for his safety and the safety of his housemates at all times. They cannot ensure safety if one individual is out for a walk, another is inside an unknown neighbor’s home, and a third is in his room. As a result, all individuals are inside the group home; they do not even have a yard where they can go out for fresh air or exercise. These restrictions are all reasonable in a group home setting to provide adequate staffing to ensure all individuals’ safety, but any choice for the individuals involved must be pre-determined a week or more in advance. For people who have intellectual and developmental disabilities that affect executive functioning, that level of planning ahead is impractical, if not impossible.
My adult son wants the freedom most of us take for granted to choose what he eats, to choose in the moment how he spends his leisure time away from work, and to have neighbors with whom he can socialize. He does not have that in a group home. It is a wonderful idea to think that people with disabilities living alongside people who do not have disabilities will have regular, meaningful social interactions. However, that is not the reality.
Given the nature of his disabilities, a Medicaid waiver is necessary to cover the cost of the services he requires. He has the right by law to choose the setting in which he receives those services. With the support of his case manager, he has thoroughly explored the options currently available with his Medicaid waiver. He has lived in a group home for several years and does not feel that his social and emotional needs are met. He feels like the other options that his case manager has shown him are even less able to meet his needs for true social and community engagement. In short, the current options available with Medicaid waivers fall short of meeting my son's needs. Vanguard Landing is the place that my adult son has chosen to receive the support he requires to live the life he wants. We believe that our son has as much right to choose where and how he lives as anyone else and that he should be able to use his Medicaid waiver to exercise that right.