‘Call to action necessary’


To the editor:

I am writing to you as a concerned parent and board member of the Delaware County Board of Developmental Disabilities regarding recent changes to the implementation of Private Duty Nursing (PDN) as a service in the Medicaid State Plan Program.

These changes have had a direct impact on the quality of care and quality of life of individuals with disabilities and their families. County boards and families across Ohio answered a call to action when the governor’s proposed 2016-17 budget specifically targeted the phase-out of independent providers for Medicaid Waiver services by 2019. Several state representatives and senators heard our voices and determined that a review of this recommendation was warranted, because of the impact on those with disabilities and their families that help care for them. This mandate would have had a direct impact on the service delivery model of Self Determination and Free Choice of Provider, for individuals with disabilities.

This call to action was necessary, because lawmakers recommend changes to save costs, without a review or understanding of the potential impact on those individuals the laws are designed to serve. I understand the need to save costs, but we need to understand the potential impact before we rush to save costs.

Recent editorials have been in response to Medicaid coverage for pre-natal care being re-instated for those who need the care — a decision that would actually save costs. Now we must all stand up and ask lawmakers to review a change in the assessment and delivery of PDN services for individuals on Medicaid State Plan services. Individuals with disabilities are sometimes served using the Level One Medicaid Waiver and the Individual Options Medicaid Waiver for needed services.

In addition, individuals with disabilities also access Private Duty Nursing services through the Medicaid State Plan services, which is critical in the daily care of individuals diagnosed with certain medical conditions (i.e., Rett Syndrome, cerebral palsy, etc.), that require a gastrostomy tube, tracheostomy care or ventilator. Having PDN services through Medicaid allows parents and other family members who care for these individuals the ability to work. The change in how PDN is assessed for individuals has resulted in a reduction to PDN care that now allows only four-hour blocks of time and a parent or family member must be in the home.

For many single parents, and other family members, this is going to require them to quit their job/career to be in the home while a medically trained person comes to care for the disabled/medically compromised child. This change in the assessment and implementation of PDN services has been noted by families most recently in March 2015. There are several instances of denial and appeals, severely impacting individuals with very severe disabilities and their families.

Some individuals have lost PDN services even though their conditions have not changed, based on an adjustment of the acuity scale (scale used to determine eligibility) that now disqualifies them for PDN. Not only do these individuals no longer qualify for PDN, but a family must be present for the four-hour block of service. This means the parent, or family caregiver, who used to be able to work, can no longer work because they must be present for the services to be provided. Both the individual with a disability and the family member will not be able to work, and be more dependent on government funding. Now the state will have two individuals they will have to support. This is also in direct contradiction to the state and federal government mandate of community inclusion for both work and living for individuals with disabilities.

This apparent trend by the Ohio Department of Medicaid seems to be an effort to shift costs and care from the Medicaid State Plan program to the county boards of developmental disabilities. However, Private Duty Nursing under the state plan is a service that is not available under other waiver programs.

The county boards of developmental disabilities and families across the state are working together to ensure individuals with developmental disabilities receive services that help them live successfully within their communities. It takes an overarching network of support to make this a reality. We need all concerned individuals and families caring for individuals with disabilities to contact their state representatives and senators, asking them to review the Medicaid changes and rule implementation and interpretation, to ensure individuals with disabilities and the family members that care for them can continue to work and live in their communities. It is the right thing to do and the cost-effective response to the taxpayer!

Stephen Finney


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