Rare Disease Day in Frankfort Kentucky
- Published on February 27, 2017
Thank you to Pat and Jennifer and NORD for having this event. I am honored to be here
Marinesco Sjogren’s syndrome disorder, consist of cataracts, mental retardation ataxia, cognitive delay and very small in stature. It is a genetic disorder and is hereditary. the SIL1 mutation on chromosome 5 was recently discovered for the syndrome. Both parents must have the mutation to produce offspring with the disorder. the other children can be carriers or not have it.
Three of those 200 known cases are my sister and two brothers
Having this Rare disorder made them members of the disability community.
It was a bad time to be born with a disability in the 1960s. Children’s Hospital immediately recommended they be sent to Frankfort State Hospital and school. Over the next 10 years, it was a constant back and forth between Frankfort and Children’s Hospital to try to get two of the children committed since there were no services in the community at that time. They could not attend school. They could not attend church. They lived in the shadows of society. They had to be diapered, fed and cared as a baby would, so we as children were caregivers.
Eventually, this took its toll on the Family and they had to be placed in state care. I reviewed some of their records and it shows ten years of correspondence between Frankfort State Hospital and Children’s Hospital insisting they be institutionalized and Frankfort saying no room, they are on the waiting list. The also stated they didn’t take children under the age of 6 yo. but the records also show a court order for Alice to be admitted there in 1965.
Frankfort state hospital closed in 1972 so Alice and Jeff were sent to Hazelwood. in Louisville 1973, After being there less than a year Alice died from asphyxiation due to a restraint
Jeffrey was then moved to Oakwood in Sommerset, Ky and eventually was able to return to his Northern Kentucky community. He died from asphyxiation due to a restraint
Michael was placed locally with foster parents and sadly he too died of asphyxiation in his own bed. Asphyxiation was not part of the syndrome.
Michael’s Foster-father was arrested and charged with sexually abusing one of the other children in their care. In Jeffrey’s first placement in foster care, the man also was accused of sexual abuse of Jeffrey.
My mother and father brought all three children home to be buried in our family plots to finally rest in peace. There are many in unmarked graves at FSH Cemetery and ESH Cemetery.
I struggled with what to say today. I felt I have to speak for the dead and honor what they would want me to say. This is beyond tragic. This is systemic and goes on every day. Folks with disabilities are at high risk of abuse and sexual assault, seclusion and restraint.
I am mindful there are still people in Institutions in KY in group homes, PCH homes etc. wanting to return to their communities. there are also folks at risk of being sent to nursing homes and Institutions because of the cuts to Medicaid.
7,000 people on our waiting list for home & community-based services, 5k on MP … 2k on SCL waiting list
No one w/ a disability should be forced into a nursing home because of lack of integrated home and community options
We must look at where we were in the 60’s and where we are now in 2017. We are at a crossroad. Everyone and anyone are at risk of becoming a member of the disability community at any given time.
I want to encourage everyone to take a stand and support people with disabilities call your legislators and representative.s We can and must do better and they deserve better. I believe we will be judged by how we treat the weakest among us.
my speech in Frankfort. 🙂
Video with speech here: