Mathew is a well-mannered, 21-year old young man who was placed in a nursing home by his mother.  He whispers to speak—for words to pass through his lips, it takes all of his energy.  You must lean in to hear him because each word is calculated.  Mathew has Leigh’s disease; a neurological condition that weakens his muscles.  Yet, Mathew is like any other young man of his age. He loves the Georgia Bulldogs, playing video games, going to the movies, listening to country music and hanging out with friends.

In meetings with the Children’s Freedom Initiative, Mathew clearly communicated his desire to leave the nursing home but it required a Medicaid waiver to move into a home in the community.  Just when Mathew was approved for his waiver he was hospitalized with Pneumonia, a common threat to residents living in congregate care. Mathew recuperated and managed to move out.  He now lives with his caregiver, travels and regularly plays video games with the guys in his neighborhood.

Nola Sayne has perhaps traveled Interstate I-85 from Kennesaw, Georgia to Montgomery, Alabama more than anyone. Kennesaw to Montgomery is an 8-hour round trip drive she took once, sometimes twice a month for the last nine years to visit her son Zach who resided in a long-term pediatric nursing facility. The decision to place her son in an institution was not easy. But she could not bare the guilt of breaking her commitment to not forget about him, not pretend that life is better for him away from her love and attention. Ms. Sayne tried to bring Zach back home to Georgia but because he is not a Georgia resident, it was difficult. One obstacle was that his Medicaid funding was tied to Alabama, where he lived.  This situation was a bureaucratic nightmare that Ms. Sayne patiently wading through with the support of her husband and her advocate at the Children’s Freedom Initiative.

Time has run out for some children living in an institution. Zach died in a nursing facility January 2013 while waiting on a Medicaid Waiver that would have provided the support for him to live at home.