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Money Follows the Person - Participant Experience

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OPENING THE DOOR FOR PEOPLE WITH DISABILITIES AND OLDER ADULTS TO BE PART OF THE COMMUNITY

“Money Follows the Person” (MFP) Demonstration Project helps fund individuals who transition from institutional settings and back into their homes and communities

Under North Carolina’s Money Follows the Person Demonstration Project, a growing number of North Carolinians are able to transition out of long-term, institutional settings and return to their homes and communities.  Working in strong collaboration with local, regional and state partners, MFP strives to be both a “public initiative and a community effort,” notes Trish Farnham, the NC MFP Project Director. “The wonderful stories this Project has produced are a tribute to those who assisted MFP participants in the transition process and the families and communities who welcomed them home.”

The program is available to Medicaid-qualified individuals who lived in a hospital, skilled nursing facility or an intermediate care facility for people with intellectual or developmental disabilities (ICF-I/DD) for at least three months and meet Community Alternative Program for Disabled Adults (CAP/DA), Innovations Waiver or Program for All-Inclusive Care for the Elderly (PACE) requirements.

Participant Stories in the Press


Oshin
 Oshin

Oshin's Story

All Oshin really wanted for Christmas 2013 was to go back home to Asheville. She received her gift shortly before Thanksgiving Day.

Born in Jamaica in 1994, Oshin had medical issues from birth. These were complicated by a Traumatic Brain Injury (TBI) caused by brain surgery at the age of 5. This combination of medical problems and injuries left Oshin with developmental delays, behavioral issues and a seizer disorder.

Oshin’s mother came to the U.S. when Oshin was 8-years-old, leaving her daughter and son with family and friends in Jamaica. Oshin was 17 when she and her brother, Jim, were reunited with their mother in Asheville. Eventually Oshin went to Copestone, the psychiatric services section of Mission Hospital, and was placed in a group home in Swannanoa.

Oshin was lonely, as there were not many people at the group home her age. She was placed in a sheltered workplace and given menial tasks. Oshin was very unhappy at the group home and wanted to go back home to live with her mother. She stopped eating, lost weight and was given nutritional supplements.

The group home contacted Oshin’s mother about the Money Follows the Person (MFP) program. Once Oshin’s seizures were stabilized, it was time to begin planning for her homecoming. The goal was set to have her home by Thanksgiving. Thanks for MFP and the support of Smoky Mountains MCO, Oshin was able to access and innovations slot and get home with three days to spare!

Once home, Oshin regained her appetite and gained 14 pounds (some of the MFP funds were used to buy her new clothes). She is now enrolled in the Open Hearts Day Center each day from 9 a.m. to 3 p.m. where she makes and sells art (keeping 50 percent of the profits). Oshin also receives one-on-one care every weekday from 3 p.m. to 7 p.m., including in-home skills building and interpersonal skills. Her mother and step-father also receive some respite care on weekends.

Oshin’s long-term goals include returning to an earlier hobby of making baby clothes for dolls – and perhaps one day owning her own boutique and/or hair salon.

According to CAP Care Coordinator, Robin Shaw, Oshin is smiling much more and is very animated. “Her facial expression alone tells you it is a success,” she said.


Etta_and_Lulu
 Etta and daughter, Lulu

Etta's Story

Money Follows the Person supports both participants and the family members (caregivers) who love them.

In 2012 almost 30% of the U.S. population provided unpaid caregiving services to a loved one who was ill, disabled or aged.* Unpaid caregiving services were valued at $450 billion per year in 2009 – up from $375 billion in 2007.**

Etta, 86 and her daughter, Lulu, 70, are an example of such a family. Etta was living with Lulu when she became sick and unable to walk. After two weeks in the hospital, Etta spent nine months in Woodhaven Nursing Center in Lumberton, N.C.  

Etta’s illness took its toll on both the mother and daughter. Both wanted Etta to return home, but Lulu was concerned that she and her husband could not meet all of her mother’s needs. Lulu was getting mixed messages from both friends and professionals, ranging from “this will be very, very hard for you” to “it’s possible to do this.”

Then a social worker told Lulu about the Money Follows the Person (MFP) program. After some prayerful thinking, Lulu decided it was time for her mother to come home. MFP and New Hanover CAP/DA Waiver Program made that decision a reality.

The program provides Etta with a Certified Nursing Assistant (CNA) to help with bathing and other activities of daily living and she uses a specialized van to get to medical appointments.

“She’s been no trouble, not sick, just fine,” Lulu said. “Without MFP, I’d probably be sick and she’d probably be sick. Now she’s happy and I’m happy.”

  • * "Caregiving in the U.S.," The National Alliance for Caregiving and AARP (2009) - Updated: November 2012
  • ** "Valuing the Invaluable: 2011 Update, The Economic Value of Family Caregiving," AARP Public Policy Institute. - Updated: November 2012


Evelyn
 Evelyn

Evelyn's Story

Read More about Evelyn in The Wilmington StarNews

Evelyn was in her late 50s/early 60s when she was brought to the hospital for severe leg pain. This was the beginning of a painful odyssey which included the removal of several tumors, the amputation of her left leg and a colostomy. Eventually, she moved into a nursing facility in New York City and was told she would never again live on her own.

Eventually, she moved to a facility in Wilmington, N.C. to be closer to her children and grandchildren. But she never felt comfortable having them visit her at a skilled nursing facility. She loved the nursing home staff, but wanted her own home.

A social worker told her about the Money Follows the Person Program. By that time, she had been living in nursing homes for seven years. With the help of MFP and the New Hanover CAP/DA Waiver program, she was able to move into her own home.

“I was a little scared of the world now because I’m in a chair now and the world looks go big,” she said. “But I’m in a lovely place, a little house with a garden.

“It was a huge adjustment from going, going, going (before the illness) to sitting in a wheelchair. I thank God that I can make little things to eat and appreciate the sun, the garden, the people around me.”

Evelyn says her goals are modest – to see her grandchildren grow into teenagers, to sit in her garden, maybe to get a computer and learn to drive again.

In addition to helping her, Evelyn believes Money Follows the Person provided a special inheritance for her family.

“I want my children, my grandchildren, my great-grandchildren to never give up,” she said. “I want to leave that legacy behind.


Evelyn
 Alex

Alex's Story

Alex, 24, has Wilson’s disease, a condition similar to Lou Gehrig’s disease, which affects motor functioning (walking, talking, moving, bathing, etc.) but not mental abilities. Though non-verbal, Alex can answer yes/no questions with the help of a communication board.

Alex had lived in nursing facilities in Siler City and Durham for almost two years after being an inpatient in an acute rehab hospital in Raleigh.

“I always wanted him to come home,” said his mother, Marianne, “but as he deteriorated more, it was difficult to care for him. I felt daunted and depressed to have him at the skilled nursing facility and not be able to have him home.

“I wanted to give him better care than the nursing home was able to give him. And it was wearing the family out going back and forth.”

MFP and the Wake County CAP/DA Waiver program helped Alex get the care he needed to move back home. Alex now lives in Pittsboro with his family and a caregiver who helps him with activities of daily living from 8:30 a.m. to 5:30 p.m. Marianne said the difference in Alex since leaving the facility is like “night and day.”

“He never really ‘lived’ in the nursing home,” she said. “Home is where he belongs. He would cry when he had to go back. And I don’t have to worry about him like I did when he lived in the nursing home. The caregiver is just a phone call away.”

Alex recently got an accessible van so he can get out into the community more often, and is currently looking into taking college courses.

“I just knew that he could not stay in the nursing home forever and I needed to do anything I could to get him home,” Marianne said. “MFP was the ticket!”


Christina Ralston
 Christina

Christina's Story

“She is so much happier now,” said Patti, the mother of 33-year-old Christina, who is unable to speak, roll over, or raise her arms much above table level. Patti says she could not get a smile from her daughter when she would visit her in the institutional group home, but now “she smiles, she laughs and she sings.  She’s home and she can decide what she wants to do.”


CeCe
 CeCe

CeCe's Story

Cece, 53, has an eating disorder which caused various medical problems, including problems with walking, bathing and other personal care issues. Following weight reduction surgery, she lived in a rehabilitation center in Ohio for four years, followed by seven months in a rehabilitation center near Morganton, North Carolina.

Though Cece enjoyed the staff in both centers, it was hard for her family to visit and she missed them terribly. Thanks to the Money Follows the Person and Catawba County CAP/DA Waiver program, she now lives in her own home near Hickory– reunited with her husband of 15 years, as well as other friends and family.

“It is awesome here at home,” she said.” I can go outside and get sunburned. I love the animals. My neighbors have dogs, my mama has dogs. I would love to have a dog, but it would be hard here.”

Her personal care assistant says Cece is much happier at home with her own possessions, including an extensive collection of NASCAR collectables, especially Jeff Gordon, memorabilia.


Ronald Deaver's famiy
 Ronald and his family
Ronald's Story

Ronald lived at home until he was 14 and then moved to a group home.  He lived the next 20 years in an institutional setting.  Ronald is deaf, has autism, a seizure disorder, and does not use words to communicate.

A year and a half ago, with the help of the MFP and Catawba County CAP/DA Waiver program, he moved to the Hickory area, where he lives with his mother, Ruth. 

Formerly frustrated and uncommunicative, Ronald now interacts with his mother and sisters and goes out in the community, with regular visits to a nearby Starbucks.

He is active in the visual arts and his painting and drawing have been recognized at the district level.  One work recently won a state award.  Ronald regularly participates in a day training program where he shreds paper and performs other tasks.  He is now on fewer medications and sees the family doctor.  Ronald recently went on his first family vacation since he was a young child!  He traveled with his mother and a sister to Florida, and a seaside visit…  

Ronald's sister once worked at the institution where he lived for 20 years and understood the limitations of institutional life.  She advocated continuously for him to come out of the institution.  Tears well up in her eyes as she recounts the changes that have happened because of MFP, and observes: “We are a family again, and you can see how much this new freedom means to him.” 


Jabreel Pearsall
  Jabreel

Jabreel's Story

Jabreel has autism and speaks little, but he lived at home until two years ago when he moved to a group home.  His mother soon saw that he was becoming depressed and that his communication and social skills were declining. 

Because of MFP and the Guilford County CAP/DA Waiver program, Jabreel moved out of an institutional group home to an apartment in Greensboro where he lives with Kevin, his support provider.  The experience has been liberating.  Now 21, Jabreel has an opportunity to share his interest in sports with friends and he enjoys singing. He likes to dance too.  He does not speak much, but will respond briefly to questions. 

Jabreel and Kevin travel to New York often, typically to attend sports events, and also are actively involved in the Greensboro community.  “My son now has a warm, broad network of people in his life, and there are more opportunities for normalcy for my son,” his mother, Shelia, said.   


Henry Deese
 Henry

Henry's Story

Henry, 69, has schizophrenia and dementia.  Henry lives in Charlotte with Anthony, who is his guardian and support provider.  He had lived in an institutional group home after his family had become unable to provide him with the care that was needed. He was able to move to his own home with the help of MFP and the Mecklenburg County CAP/DA Waiver program.

Since he moved, the county social worker reports she has seen tremendous change; that his demeanor and attitude have become more free and relaxed.  Henry now attends classes and takes part in a day program. 

Anthony reports that Henry is comfortable in the new setting and helps with laundry and other household tasks, but really enjoys going out to community events and “getting out” on long trips.” 

Looking back it is remarkable what has been accomplished to date, “and we are still early in the program,” the county social worker says.  She explains that MFP is a federal initiative that is administered by North Carolina’s state Medicaid agency, the Division of Medical Assistance.  MFP’s origins in North Carolina came from the collaborative efforts of the NC Council on Developmental Disabilities, the Centers for Independent Living, other grass roots advocacy groups, and state partners from various divisions within the NC Department of Health and Human Services.     

The MFP Demonstration Project is founded on the principle of individuals having the right to choose where they receive their long-term support services.  As the social worker notes, “people have a great desire to have control over their day-to-day activities, to lead self-determined lives and to be included in their local communities.”