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NC Department of Health and Human Services
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Medical Assistance
 
 

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

 

Teresa and Mark
 Mark Steele, DVRS, and Teresa

Teresa's Story

Teresa is 59-years-old and lived in a nursing home for two years “and 23 long days” before she successfully transitioned to living in a one-bedroom apartment in Greensboro.

She contacted her advisor and then Greensboro Social Services, who referred her to Mark Steele in the Division of Vocational Rehabilitation Services’ (DVRS) Independent Living program. Mark referred her to the MFP program and recommended a Sure Hands ceiling lift to assist her in getting in and out of bed. Each day she receives five hours of personal assistance services through CAP/DA to help her perform various activities of daily living. 

When asked about the impact MFP had on her life, she commented that, “This program is a life changer.”

 


Teresa and Mark
 Jackie Lee and Tony

Jaqueline Lee's* Story

Jacqueline Lee (Jackie Lee) had diabetes for about 15 years, but at age 57 her life was going well. She was living in beautiful rural Franklin, NC, working in a job she loved. But then she lost her job, health insurance, and soon became unable to afford her essential medications. As a result Jackie Lee became very sick. She was falling often and had peripheral neuropathy (pain and numbness in her feet). Eventually it became difficult for her to even stand up.

Despite the support of her sisters, Jackie Lee could no longer live in her non-wheelchair accessible house. Jackie Lee moved into a nursing home for a month of post-acute rehab, but she had no safe place to return home. She applied for subsidized housing vouchers, but the waiting list was between two and three years long. Other potential housing options also fell through. A year later, Jackie Lee was still living in the nursing home.

Jackie Lee described her experience in the nursing home as akin to homelessness. “I had nowhere to go and no hope of having anyplace to go home to,” she said. “I felt forsaken and didn’t see anyway out. I was in tears 100 percent of the time, always waiting for the other shoe to drop.”

Then she found out about the CAP/DA and Money Follows the Person programs through the Local Contact Agency Options Counselor, Donna Case, and Independent Living Transitions Coordinator, Lori Massey.  Through their help, she was able to obtain affordable housing at Life House, a 20-unit transitional housing complex for people living with disabilities.

“Life is fabulous here,” Jackie Lee said. “It is safe, quiet and very secure. The people who live here – it’s a community. We watch out for each other.”

The MFP program also helped her find home furnishings and affordable primary medical care. Her new primary care doctor “prescribed” a cat to help with anxiety and depression. That is how she got Tony, a gray-and-white tabby who – after living in a shelter for a year – was also seeking a “forever home.”

Looking ahead, Jackie Lee wants to volunteer at the nursing home where she once lived, and assist at the local Meals on Wheels program. She hopes one day to drive again and actually deliver meals to homebound residents.

“None of this could have been possible without the support system I have – case workers, nursing,” she said. “I’m totally in awe of the ongoing support system.”

* First and middle name


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.

Eventually Oshin was placed in an institution 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 institution and wanted to go back home to live with her mother. She stopped eating, lost weight and was given nutritional supplements.

The institution contacted Oshin’s mother about the Money Follows the Person (MFP) program. 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 the Innovations slot and was home with three days to spare!

Once home, Oshin has become healthier and now sells her art!

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 her 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 resulted in her moving 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 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
 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 and state level. Ronald regularly participates in a day training program.  He is now on fewer medications.  Ronald recently went on his first family vacation since he was a young child! 

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, 21, has autism and 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 Jabreel has an opportunity to share his interest in sports with friends and enjoys singing and dancing.

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
 Henry

Henry's Story

Henry, 69, had lived in an institutional group home in Charlotte 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 Innovations waiver program.  He now lives with one of his favorite people, Anthony – his support provider.

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.”

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.”

 

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