If you were to ask what keeps me awake at night, my answer would be: Worrying about what will happen to my daughter when I am gone. Where will she live so that she can be happy, healthy, fulfilled, lovingly cared for in a stable environment?
During my daughter, Em’s, 18 years on the Virginia waiver waitlist, we have observed and often visited friends who are using their waiver to live in various settings: group homes, sponsor homes, apartments.
Over the years, we’ve been weighing the pros and cons of these arrangements, planning for the day when Em would have a waiver. There have been some issues that concern us in these waiver-approved residences:
-No choice of roommates: the individual usually goes where there is a vacancy with little regard for compatibility
-No choice of activities: transportation is often limited and all residents must go to the same event or else everyone stays home
- No choice of meals: all the residents eat the same meal
-Isolation: the home or apartment is located in a neighborhood of families who do not relate to residents of a group home. They may be friendly but are not your friend.
- Accessibility: the house (or often a townhouse) was built for family living. Bedrooms are on the second floor with small closets, shared bathroom, little privacy.
None of these places ever seemed like the right one for Em.
When Em’s waiver was finally granted, the only option we were offered was for her to live alone in an apartment with “some support”, the support unspecified. My daughter cannot live that way.
Our first visit to Vanguard Landing gave us hope! Subsequently,during many hours visiting Vanguard Landing and making comparisons to existing waiver approved homes, I have come to believe that Vanguard Landing meets the requirements of the frequently mentioned Settings Rule in terms of availability and choice of activities, variety of meal options, opportunities for community involvement and employment. In addition, it is a cheerful place with caring staff.
We all use the term “people with disabilities” as a general category. In the link above this comment page, the DMAS checklist urges providers to “recognize that integration is not a one-size fits all”.
We as parents have learned through years of real- life experience that our children with developmental disabilities are not all the same. Some may be articulate, confident, street smart and physically strong. Others may be difficult to understand, shy, naïve and have physical limitations.
Because of these differences in personality and abilities, all “people with disabilities” will not choose the same residential situation. It’s time to consider some new options based on the reality of the world in 2026.
Please allow our family members to choose where they want to live, not where you want them to live.