A Very Special Girl and a Gift From God
by: Greg Fredrickson, parent

My daughter Chrissy Green, is a very special girl and a gift from God. Chrissy was born with Schizencephaly, which is a condition consisting of abnormal brain development resulting in lesions and/or gaps in brain tissue. Many children with Schizencephaly die before the age of one due to the many complications that are involved. Through Chrissy’s prognosis was much better, she has suffered from many related medical difficulties as a result of her diagnosis. Chrissy has struggled with cerebral palsy tendencies. She has had spastic paralysis in her left hand, epileptic seizures, and muscle spasticity her entire life. She has never been able to stand or walk on her own.

Getting Chrissy the right care has always been a challenge. Before we had the waiver, Chrissy was eligible for PCA services through Medicaid. But, as many families face, there were no PCA’s available to assist us when we needed them. With Chrissy’s medical complications, there were always tons of doctor’s appointments and county assistance meetings. With Chrissy’s mother working  full-time, we really needed some help! To complicate matters, at times a PCA would be available to work some hours but we live 20 miles outside the city so frequently, we would get nobody at all.

Last year, Chrissy underwent major surgery to try to address the constant muscle spacisity and rigidness that keeps her wheelchair bound. Chrissy needed a complete reconstruction of her left hip and some work to her right hip as well. The surgery was no guarantee that she would walk but was necessary to prevent future problems with her leg and hip development. Chrissy was in a great deal of pain when she would try to walk or stand with support.

Following the surgery, Chrissy has had to receive botox injections in her legs and thighs to minimize continued muscle spacisity. Chrissy has also had to undergo in-home physical therapy exercises every day and she has to go into Gillette Children’s for Physical Therapy three times per week.  At times, these exercises were excruciatingly painful for Chrissy and difficult for us, as caregivers, to carry out correctly.  Dungarvin assisted us in assuring the staff were training to assist with the physical exercises and the staff even helped with follow-up appointments.

We are extremely grateful for the assistance of the waiver and we are especially happy with the Consumer-Directed option [in Minnesota]. The folks at Dungarvin have been a real blessing.

Initially, our case manager referred us to Dungarvin because she said they had a great Employee Leasing program that would assist us in finding and training good quality staff to help take care of Chrissy.  Through the Employee Leasing program, we get the assistance we need to be an employer to Chrissy’s staff. In addition, Dungarvin’s support coordination service really helped us focus on Chrissy’s services and direct the waiver funding where it was most needed.

The benefit of having a provider like Dungarvin at our side has been this team of individuals determined to find the right services for our daughter. Where there seemed to be barriers to success, Dungarvin staff and our case manager helped us to think outside the box to find creative ways to help Chrissy. Whenever we thought of something Chrissy’s might need, we would discuss it with the support coordinator and she would work with our case manager and the Fiscal Intermediary to get the change approved.  And our support coordinator has always been willing to work cooperatively with other support personnel such as Chrissy’s Physical Therapist and hospital social worker. This team approach has made all our lives easier.

Through the Consumer-Directed waiver option, we have overcome many challenges. We noticed that Chrissy’s seizures were far worse in hot weather and we were able to use the waiver funding to have an air conditioning unit installed in our main living area.  Chrissy’s adaptive stroller was old and wouldn’t fold up and fit into our vehicle, so community outings became almost impossible. The Dungarvin support coordinator worked closely with Chrissy’s Physical Therapist to order the right stroller for Chrissy and she worked with the Dungarvin fiscal intermediary to get it paid through the waiver. We had a ramp to our front door but the door was too small to fit Chrissy’s wheelchair freely. Dungarvin helped us use the waiver dollars to have the door widened.  We were able to purchase an adaptive tricycle so Chrissy can ride and play outdoors with other kids her age. It gives her a sense of independence and helps improve her muscle tone.

The staff Dungarvin provides have been great too. They take Chrissy into the community and don’t seem to mind driving as far as twenty miles to get to our house every weekend.  The CDS waiver option allows us to reimburse them for mileage and money spent on community activities. Money is hard to come by these days and so having this assistance means Chrissy gets to enjoy every opportunity, even when we’re feeling a little financially strained.

I would recommend Dungarvin’s Fiscal Intermediary, Employer of Record, Employee Leasing and Support Coordination services to any one who feels they need someone professional and knowledgeable in their corner.