NORFOLK Va. – A Norfolk family is in D.C. preparing to speak in front of Congress Thursday.
The family is fighting for their disabled sons’ freedom to live in the community instead of in an institution.
35-year-old Nicholas and his younger brother 31-year-old Adam are both disabled.
“They were born with cerebral palsy and a severe intellectual disability and they need total care. They can’t walk, they can’t sit up, they are nonverbal, they need to be fed,“ Pam Wright said.
They have also lived in their own apartment for the past ten years thanks to a Medicaid waiver.
With recent Medicaid cut backs, funding for the waiver could be affected.
Hope House executive director Lynne Seagle says the community based living is not only cheaper but it keeps families together.
“You can get something called a Medicaid waiver which waives the criteria to go into an institution and actually receive the services and supports you individually need to live in neighborhoods and communities like everyone else,” Seagle said.
Pam and Phil Wright say it’s a gift their sons get to live in the community rather than an institution.
They say Nicholas has experienced jazz fest, Adam has received more personal care and both get to live life to the fullest.
More importantly it gives them the ability to be a normal family.
“We knew we could visit any time not just visiting hours. We have even stayed overnight in the beginning, we’ve stayed and hung out with them. We come in and cook. We can visit and they staff don’t say okay it’s time to leave now,” Pam Wright said.
Thursday Pam will stand before Congress to explain why funding needs to continue to go to community based living.
“People with disabilities regardless of how significant their disabilities are really thrive in neighborhoods and communities in inclusiveness,” Seagle said
“They don’t have to be shut away, they don’t have the be hidden or feel disgraced because they have disabilities,” Pam Wright said.