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[Editor's Note: Names have been redacted to protect privacy]
Dear Chairman Sykes and Members of the committee,
My husband and I have three Adult children with very severe disabilities and degenerative terminal prognoses. We are here today to beseech you to help us keep Private Duty Nursing for Adults in the state budget.
Our adult Daughter K. has cerebral palsy and lupus. She is fed by tube, stops breathing unexpectedly and frequently, and has several kinds of seizures. Her care is complex and labor intensive. She is however, happy and a Joy to be with. She loves being in her community and smiles a great deal of the time.
K. utilizes Private Duty Nursing from the state plan optional Medicaid services. She uses this service at night when her needs are very significant. She like others cannot survive without this service. The nurses who are with our children at night provide medications given via tubes, respiratory treatments, management of ventilators and tube feeds, push IV medications and all manner of skilled procedures. They must be at their side to get them through the night.
If K. could not have this care some might think she could live in a sub acute nursing facility. They could not meet her needs and the cost to the tax payer would remain. This would also be a violation of her right to live in her most integrated environment under the OLMSTEAD act of the federal government.
We would be forced to sue the state on her behalf therefore wasting more of the tax payer's money.
I cannot stay up all night and work all day as I must do to support our family. My husband is disabled with leukemia and neuropathy subsequent to a failed bone marrow transplant. He cannot do this night care.
A few years ago ODJFS decided to remove this service from the state plan by rule revision. At a JCARR hearing I gave testimony. They could not prove that there would be a financial neutrality or savings from eliminating this service. Therefore they could not pass this rule. This is because these people who receive it must receive it or the state has to pay for facility based care or Welfare package services for the family who does it. These are not cases where the service can be done without.
The state of Ohio has decided to keep PDN in the state budget for those less than 21 years old. The federal government EPSDT requirements are met in part in this way. When our children turn 21 with degenerative diseases the care is more complex and labor intensive than earlier on and we as parents are older and tired. Please do not make 21st birthdays a time of fear and dread for these fragile individuals.
We as older family members have had to fight a hard and long fight to gain the services our children need. Our children are the first surviving generation of medically fragile people coming out of the NICU technology. This is a new thing for the system to deal, with our kind of complex and expensive person. Many years ago we picketed governor Voinovich's office for several weeks. We are so determined to help our children survive. He became a great friend and champion of our cause as his understanding of our situations and our hearts and work ethic increased. He helped to place our nursing in state budget and rule. We know that if you understood our situations you would assure that our services remained. We are determined not to become members of the welfare system as some have done when they have severely disabled children and cannot work. Our children and families in no way have contributed to creating the situations they are in. It is the mark of an ethical and civilized society to meet the needs of those our medical system has kept alive with dignity. Please don't make our families live through the stress and nightmare of yet another fight for our lives and those of our children.
Please assure that PDN Private Duty nursing is in the state budget as the Governor recommended. It is the right thing to do. The budget must not be balanced by letting our children die. Thanks so much for helping us and hearing us.
[Parent Signature]