Launched December 31, 2022: 'UNMET: North Carolina's Disability Crisis' by award winning ZUMA Press photojournalist ROBIN RAYNE. Luke who has cerebral palsy and is quadriplegic, is non-verbal but uses an eye-gaze activated computer to type words and communicate. He lives with his aging parents in a rural area of North Carolina and is dependent on them for all his needs. Spencer Russell listens to podcasts of comedy routines on an I-pod over and over again, laughing at every joke he's heard countless times before. Luke and Spencer are both on the state's ''Registry of Unmet Needs''. It is a waiting list for Medicaid-funded supports for residents with intellectual and developmental disabilities, but that list currently has at least 15,000 names recorded, with a 10-15 year waiting period to access those services. Last year, a judge ordered the state of North Carolina to address the shortage of direct support professionals and provide services to people who need them. However complying with the order will require significant funding from lawmakers. Welcome to 'UNMET: North Carolina's Disability Crisis' Photography and Text by Robin Rayne/ZUMA Press Wire
© zReportage.com Story of the Week #872: Launched December 31, 2022: 'UNMET: North Carolina's Disability Crisis' by award winning ZUMA Press photojournalist ROBIN RAYNE. Luke who has cerebral palsy and is quadriplegic, is non-verbal but uses an eye-gaze activated computer to type words and communicate. He lives with his aging parents in a rural area of North Carolina and is dependent on them for all his needs. Spencer Russell listens to podcasts of comedy routines on an I-pod over and over again, laughing at every joke he's heard countless times before. Luke and Spencer are both on the state's ''Registry of Unmet Needs''. It is a waiting list for Medicaid-funded supports for residents with intellectual and developmental disabilities, but that list currently has at least 15,000 names recorded, with a 10-15 year waiting period to access those services. Last year, a judge ordered the state of North Carolina to address the shortage of direct support professionals and provide services to people who need them. However complying with the order will require significant funding from lawmakers. Welcome to 'UNMET: North Carolina's Disability Crisis' Photography and Text by Robin Rayne/ZUMA Press Wire
© Robin Rayne/ZUMA Press Wire)
© Spencer is out of the school system and has few opportunities for friends or activities beyond what he is able to do with elderly parents. His parents have been unable to hire any support staff for Spencer. North Carolina's disability population faces a critical shortage of direct support professionals (DSP who assist those with physical, intellectual and and developmental disabilities. The shortage leaves hundreds of individuals dependent on families to help with their daily care, which places undue strain on family resources and abilities. (Story by: © Robin Rayne/ZUMA Press Wire
TERRY RUSSELL tries to encourage his son SPENCER to ride their bicycles together. Spencer, 22, is out of the school system and has few opportunities for friends or activities beyond what he is able to do with elderly parents. His parents have been unable to hire any support staff for Spencer. (All Usage Must Credit: © Robin Rayne/ZUMA Press Wire)
© October 31, 2022, Charlotte, North Carolina, USA: TERRY RUSSELL tries to encourage his son SPENCER to ride their bicycles together. Spencer, 22, is out of the school system and has few opportunities for friends or activities beyond what he is able to do with elderly parents. His parents have been unable to hire any support staff for Spencer. (All Usage Must Credit: © Robin Rayne/ZUMA Press Wire
SPENCER RUSSELL, 22, who experiences autism, listens to music to pass the time. He is out of the school system and has few opportunities for friends or activities beyond what he is able to do with elderly parents. His parents have been unable to hire any support staff for Spencer. (All Usage Must Credit: © Robin Rayne/ZUMA Press Wire)
© October 31, 2022, Charlotte, North Carolina, USA: SPENCER RUSSELL, 22, who experiences autism, listens to music to pass the time. He is out of the school system and has few opportunities for friends or activities beyond what he is able to do with elderly parents. His parents have been unable to hire any support staff for Spencer. (All Usage Must Credit: © Robin Rayne/ZUMA Press Wire
SPENCER RUSSELL, 22, who experiences autism, listens to music with his father Terry to pass the time. He is out of the school system and has few opportunities for friends or activities beyond what he is able to do with elderly parents. His parents have been unable to hire any support staff for Spencer.
© Robin Rayne/ZUMA Press Wire
SPENCER RUSSELL, 22, who experiences autism, listens to music with his father TERRY to pass the time. He is out of the school system and has few opportunities for friends or activities beyond what he is able to do with his elderly parents. His parents have been unable to hire any support staff for Spencer.
© Robin Rayne/ZUMA Press Wire
TERRY RUSSELL and his wife, MARJORIE SERRALLES-RUSSELL, do their best to keep their developmentally disabled son SPENCER engaged in activities, but are frustrated with the shortage of possible support staff in their city.
© Robin Rayne/ZUMA Press Wire
SPENCER RUSSELL, 22, who experiences autism, listens to music with his father Terry to pass the time. He is out of the school system and has few opportunities for friends or activities beyond what he is able to do with elderly parents. His parents have been unable to hire any support staff for Spencer.
© Robin Rayne/ZUMA Press Wire
Luke who has cerebral palsy and is quadriplegic, is non-verbal but uses an eye-gaze activated computer to type words and communicate. He lives with his aging parents in a rural area of the state and is dependent on them for all his needs, due to a critical shortage of direct support professionals who provide in-home care for people with physical and developmental disabilities.
© Luke who has cerebral palsy and is quadriplegic, is non-verbal but uses an eye-gaze activated computer to type words and communicate. He lives with his aging parents in a rural area of the state and is dependent on them for all his needs, due to a critical shortage of direct support professionals who provide in-home care for people with physical and developmental disabilities.
LUKE WILCOX, 22, sits in his wheelchair in his parent's rural home to watch television and type on his special computer that recognizes his eye gaze to type out his messages.
© Robin Rayne/ZUMA Press Wire
LUKE WILCOX, 22, sits in his wheelchair in his parent's rural home to watch television and type on his special computer that recognizes his eye gaze to type out his messages.
© Robin Rayne/ZUMA Press Wire
LUKE WILCOX, 22, sits in his wheelchair in his parent's rural home to watch television and type on his special computer that recognizes his eye gaze to type out his messages.
© Robin Rayne/ZUMA Press Wire
NITA WILCOX feeds her son LUKE applesauce for his mid-morning snack. Luke, who has cerebral palsy and is quadriplegic, is unable to feed himself.
© Robin Rayne/ZUMA Press Wire
NITA WILCOX stretches her son LUKE's arm for range-of-motion therapy as part of his daily care routine. Luke has cerebral palsy and is quadriplegic. He is also non-verbal but uses an eye-gaze activated computer to type words and communicate. He lives with his aging parents in a rural area of the state and is dependent on them for all his needs, due to a critical shortage of direct support professionals who provide in-home care for people with physical and developmental disabilities. His parents worry about Luke's future when they are no longer able to care for him.
© Robin Rayne/ZUMA Press Wire
NITA WILCOX feeds her son LUKE applesauce for his mid-morning snack. Luke, who has cerebral palsy and is quadriplegic, is unable to feed himself.
© Robin Rayne/ZUMA Press Wire
BILLY and NITA WILCOX keep a constant watch on their disabled son LUKE. Luke who has cerebral palsy and is quadriplegic, is non-verbal but uses an eye-gaze activated computer to type words and communicate. He lives with his aging parents in a rural area of the state and is dependent on them for all his needs, due to a critical shortage of direct support professionals who provide in-home care for people with physical and developmental disabilities.
© Robin Rayne/ZUMA Press Wire
BILLY WILCOX pushes his son LUKE in his wheelchair along a county road near their home. Luke, who has cerebral palsy and is quadriplegic, is non-verbal but uses an eye-gaze activated computer to type words and communicate. He lives with his aging parents in a rural area of the state and is dependent on them for all his needs, due to a critical shortage of direct support professionals who provide in-home care for people with physical and developmental disabilities.
© Robin Rayne/ZUMA Press Wire
Dave Owen, a Direct Support Professional has been serving as Bryan's DSP for six years, working 12 to 14 hours a day to support Bryan, who has cerebral palsy and is unable to care for himself. North Carolina's disability population faces a critical shortage of direct support professionals (DSP) who assist those with physical, intellectual and and developmental disabilities.
© Dave Owen, a Direct Support Professional has been serving as Bryan's DSP for six years, working 12 to 14 hours a day to support Bryan, who has cerebral palsy and is unable to care for himself. North Carolina's disability population faces a critical shortage of direct support professionals (DSP who assist those with physical, intellectual and and developmental disabilities.
BRYAN DOOLEY and his Direct Support Professional DAVE OWEN have become good friends over the past six years that Dave has been his caregiver. North Carolina's disability population faces a critical shortage of direct support professionals (DSP) who assist those with physical, intellectual and and developmental disabilities.
© Robin Rayne/ZUMA Press Wire
BRYAN DOOLEY and DSP DAVE OWEN shop for Bryan's weekly grocery needs at the local supermarket.
© Robin Rayne/ZUMA Press Wire
DAVE OWEN, DSP, gives his client BRYAN DOOLEY secured in his bed before leaving for the night. North Carolina's disability population faces a critical shortage of direct support professionals (DSP) who assist those with physical, intellectual and developmental disabilities.
© Robin Rayne/ZUMA Press Wire
DAVE OWEN, DSP, gives his client BRYAN DOOLEY his evening shower before leaving for the night. North Carolina's disability population faces a critical shortage of direct support professionals (DSP) who assist those with physical, intellectual and developmental disabilities.
© Robin Rayne/ZUMA Press Wire
DAVE OWEN, a Direct Support Professional, lifts his client BRYAN DOOLEY from his wheelchair onto a bath seat for his evening shower. He's been serving as Bryan's DSP for six years, working 12-14 hours a day to support Bryan, who has cerebral palsy and is unable to care for himself. Dave is not paid much for his work, and has reluctantly told his client he must look for a better paying job.
© Robin Rayne/ZUMA Press Wire
DSP DAVE OWEN holds a nebulizer for his client BRYAN DOOLEY before they leave for the drive to Bryan's job.
© Robin Rayne/ZUMA Press Wire
DSP DAVE OWEN stretches his client BRYAN DOOLEY's arms during a yoga session at the local YMCA.
© Robin Rayne/ZUMA Press Wire
Direst Support Professional or 'DSP' DAVE OWEN secures his client BRYAN DOOLEY into a modified van for the drive to Bryan's job.
© Robin Rayne/ZUMA Press Wire
Wearing his favorite 'Disability Rights are Civil Rights' shirt, BRYAN DOOLEY waits for his turn in the barber chair.
© Robin Rayne/ZUMA Press Wire
Nevin Shore experiences severe autism and is non-verbal. His face is scarred from frequent self-injury. His parents have been unable to find people to hire as direct support staff for their son, leaving his mother Melissa as his only caregiver during the day with little respite until her husband returns from his job.
© Nevin Shore experiences severe autism and is non-verbal. His face is scarred from frequent self-injury. His parents have been unable to find people to hire as direct support staff for their son, leaving his mother Melissa as his only caregiver during the day with little respite until her husband returns from his job.
NEVIN SHORE, 18, experiences severe autism and is non-verbal. His face is scarred from frequent self-injury. His parents have been unable to find people to hire as direct support staff for their son, leaving her as his only caregiver during the day with little respite until her husband returns from his job.
© Robin Rayne/ZUMA Press Wire
MELISSA SHORE tries to comfort her 18 year-old son NEVIN, who experiences severe autism and is non-verbal. She has been unable to find people to hire as direct support staff for her son, leaving her as his only caregiver with little respite until her husband returns from his job.
© Robin Rayne/ZUMA Press Wire
MELISSA SHORE tries to comfort her 18 year-old son NEVIN, who experiences severe autism and is non-verbal. She has been unable to find people to hire as direct support staff for her son, leaving her as his only caregiver with little respite until her husband returns from his job.
© Robin Rayne/ZUMA Press Wire
NEVIN SHORE walks on a home made sensory box filled with tennis balls to ease his frequent meltdowns because of his severe autism.
© Robin Rayne/ZUMA Press Wire
NEVIN SHORE, 18, who experiences severe autism, finds relief from his frustration by stretching on the deck of the family home. He is non-verbal and experiences frequent emotional meltdowns every day.
© Robin Rayne/ZUMA Press Wire
MELISSA SHORE keeps an eye on her son NEVIN, who experiences severe autism and is non-verbal. She has been unable to find people to hire as direct support staff for her son, leaving her as his only caregiver with little respite until her husband returns from his job.
© Robin Rayne/ZUMA Press Wire
NEVIN SHORE, 18, roams the family's back yard for hours on end. He experiences severe autism and is non-verbal, and is prone to self-injury to his face. His hands must be 'snugged' to keep him calm. His parents have been unable to find people to hire as direct support staff for their son, leaving her as his only caregiver with little respite until her husband returns from his job.
© Robin Rayne/ZUMA Press Wire
MELISSA SHORE tries to comfort her 18 year-old son NEVIN, who experiences severe autism and is non-verbal. She has been unable to find people to hire as direct support staff for her son, leaving her as his only caregiver with little respite until her husband returns from his job.
© Robin Rayne/ZUMA Press Wire
Michelle, who experiences autism and has a seizure disorder, must wear a protective helmet during waking hours to guard against injury in the event of a seizure. Ursula, a single parent, must be in close proximity to Michelle during the day, wherever she is in their home. She has not been able to hire support staff for her daughter.
© Michelle, who experiences autism and has a seizure disorder, must wear a protective helmet during waking hours to guard against injury in the event of a seizure. Ursula, a single parent, must be in close proximity to Michelle during the day, wherever she is in their home. She has not been able to hire support staff for her daughter.
MICHELLE SMITH, who experiences autism and has a seizure disorder, entertains herself with music from her favorite singers. She has no friends, and few prospects of paid support staff.
© Robin Rayne/ZUMA Press Wire
MICHELLE SMITH, who experiences autism and has a seizure disorder, entertains her mother URSULA with music from her favorite singers.
© Robin Rayne/ZUMA Press Wire
URSULA BROWN coaches her 22 year-old daughter MICHELLE in kitchen skills. Michelle, who experiences autism and has a seizure disorder, must wear a protective helmet during waking hours to guard against injury in the event of a seizure. Ursula, a single parent, must be in close proximity to Michelle during the day, wherever she is in their home. She has not been able to hire support staff for her daughter.
© Robin Rayne/ZUMA Press Wire
Michelle Smith, 22, who experiences autism, sings along to a favorite Beyonce song as her mother Ursula watches. She wears a protective helmet to guard against injury from falls because of a seizure disorder. She has no friends, and few prospects of paid support staff. She must be in close proximity to her single mother throughout the day due to the danger of injury from seizures. North Carolina's disability population faces a critical shortage of direct support professionals (DSP) who assist those with physical, intellectual and and developmental disabilities.
© Robin Rayne/ZUMA Press Wire
ROBIN RAYNE is an Atlanta based, internationally published photojournalist and documentary film producer, specializing in developmental disability issues, human rights and social justice concerns. Spanning a 35 year career, his work has appeared in Newsweek, Time, Business Week, Forbes, New York Times, Wall Street Journal, Los Angeles Times, NBC News, DOUBLEtruck Magazine, Paris Match, zReportage.com and Der Spiegel, among dozens more.
© ROBIN RAYNE is an Atlanta based, internationally published photojournalist and documentary film producer, specializing in developmental disability issues, human rights and social justice concerns. Spanning a 35 year career, his work has appeared in Newsweek, Time, Business Week, Forbes, New York Times, Wall Street Journal, Los Angeles Times, NBC News, DOUBLEtruck Magazine, Paris Match, zReportage.com and Der Spiegel, among dozens more.
