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Home  >  Neighbor Spotlight  >  Community Reentry Darlene C.


Darlene C.


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I am now 32 years old and was diagnosed with Muscular Dystrophy (MD), at age 13. Over the nineteen years I have been living with MD, I have overcome many obstacles.  I never let my disease stop me from living life.

At age 16 the doctors gave me a ventilator to use at night called BiPAP. I didn't have a trach then. The ventilator helped support my weak respiratory muscles. As the years progressed I noticed myself wanting to use the ventilator during the day; my breathing was getting harder.

At age 26 I walked into the hospital having extreme difficulty breathing.  The doctors diagnosed my breathing problem as pneumonia and I ended up with a tracheostomy tube and on ventilator 24 hours a day. I didn't care; I just wanted to live.

When I entered the hospital I never dreamed it would be the last time I would walk. After a three-month stay in the hospital I was released to my parents' home.  Now in a wheelchair and on a ventilator, I was scared when I first went home. Registered nurses helped care for me 16 hours a day and my family the rest of the time. 

Photo: Darlene C.

"I never let my disease stop me from living life"
 

I lived with my parents for approximately two years and during that time met and fell in love with a young man. We ultimately ended up living together with a wedding date of June 22, 2002 being set. During this time I requested to have my nursing care reduced on the weekends to 8 hours. This was agreeable to my Medicaid worker, and instructed me that if I needed the 16 hours again, just ask.

Unfortunately my fiancé' and I broke up in July of 2001. These things happen to people all the time, relationships begin and end; however when you have MD and need assistance, this started my dilemma.

When my fiancé' went his separate way I asked for 24 hour care so I could stay in my own apartment. I wanted to be independent; I wanted to live as close to normal as possible. I was denied the additional help including the original 16 hours on weekends.

My caseworker then suggested a nursing home; I didn't like the idea.  I was running out of time, I needed nursing care by September and it wasn't happening, so I agreed to the caseworker suggestion of a nursing home. It was my understanding this was temporary, until I could find my own place and get the nursing care I needed.

One of my home care nurses called Adult Protective services because my former fiancé', who was still caring for me, failed to return on time to relieve her. Her opinion was I was abandoned.  At this time I thought things had been explained to everyone's satisfaction and the caseworker was going to help me find alternate living arrangements. She did - a nursing home.

The people from the nursing home came and visited me; all the paperwork, transportation, and a bed was now available. So, on August 16th I became a nursing home resident.

 


"My Caseworker suggested a nursing home; I didn't like the idea."

Photo: Darlene C.



I knew immediately this was not the place for me. Everyone there was much much older than me. I was so depressed I stayed in my room. I cried everyday, called my family and asked them to help me find a better way.

Near the end of October I had a brief hospital stay and another option was offered to me. My parents went to the Northeast Center for Special Care and took a tour and looked at what would be my room and saw a much younger group of people. They thought this would be a better place.

At Northeast Center I met many new people, a lot in the same situation as myself. I told the staff at Northeast Center I wanted to get home. The Social Worker applied for home nursing care with social services in the area I am from. The office of social services even came to visit me here. Upon returning to their office they promptly denied my request, citing nursing shortage in my home community and that the Center was a nice place with people my age.

I  was determined and had the support of my family, the staff at Northeast Center, and patient advocates to help get me home. The Community Reentry staff at Northeast Center told me about the Olmstead Act and the Consumer Directed Personal Assistant Program. I met with my Treatment Team and we arranged a detailed plan of discharge utilizing the Consumer Directed Personal Assistant Program with my sister as my primary care giver. I was hopeful again, I had a plan!

Within days of my meeting I was informed by social services in my home community that I was denied even consumer directed care. I was angry, frustrated, depressed and confused as to what to do next. My community reentry person person here and my patient advocates helped me get a hearing to try and reverse the denial of services. My family helped me get my message and story into the media so everyone would know that these things happen. Northeast Center has given me this web page to help others find their path home as well.

 

Photo: Darlene C.
"The Northeast Center told me about the Olmstead Act and the Consumer Directed Personal Assistant Program."
 

I am happy to tell you I got my hearing and I Won! My Consumer Directed Personal Assistance training has begun and hope has been restored.

Editors note: Darlene and her family finished their training and she was discharged home in October of 2002.  Once again Darlene is able to live independently and be in control of her care and of her life.


 Northeast Center for Special Care QUICK FACTS:  

  • Community Reentry - Case management and advocacy to assist an individual to return to an integrated community setting.
  • Olmstead Act - Olmstead vs. L.C., a 1999 Supreme Court decision that requires states to provide services and programs to enable individuals to live in the community.
  • Consumer Directed Personal Assistant Program (CPAP) a A Medicaid program that allows individuals to hire and manage their own personal assistant aides rather than have to rely on home care agencies.  The program places control into the hands of the person needing the services.

 


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