Ohio Waiver Nursing Coalition

Supporting Families with Nursing Care Denials

Goal:

Educate and advocate for nursing solutions and policy changes that sustain and/or improve the
health and safety of children and adults with intensive medical needs and developmental
disabilities.

Background:

Since April 2018, Ohio Family to Family Health Information Center (OHF2F) has led conversations
with families, guardians, and multiple state agencies about children and adults with special health
care needs who are at risk of losing or have lost nursing services as a result of policy changes by
the Ohio Department of Medicaid (ODM) and the Ohio Department of Developmental Disabilities
(DODD).

During these conversations, we learned that families were often faced with having to appeal
ODM and DODD denial of nursing services that were ordered by their physicians and deemed
medically necessary to maintain health and safety of the child or adult with developmental
disabilities. Families who have been denied nursing services report that their only alternative is
to use Homemaker Personal Care (HPC) with Delegated Nursing. For families, this means to
develop and operate with and within an unfamiliar homecare model and have to recruit and train
HPC staff who are competent and confident in caring for a person with intense medical needs.
Due to the shortage of direct support professionals, it is often not possible for families to find a
provider for their family member with complex care needs. In light of the direct support
professional (DSP) crisis, DODD has agreed to temporarily maintain nursing services (also called
“stay put”) or actively recruit qualified direct service staff while families are working their way
through the appeals process.

However, the current situation puts families and their loved ones in a position in which they face
the threat of institutional placement when direct care providers can’t be found and be kept long-
term; or worse, hospitalization and death.

When families advocated for nurse delegation in the 1990s, they did so to create a greater level
of choice of provider. Nurse delegation was never intended to become the mandatory, standard
level of care, and continuous nursing the exception for extreme medical cases.

The Issues:
 Current statewide shortage of direct support professionals leaves families with a very
small pool of possible providers.
 Rigid legislative rules cause extreme stress on families to educate themselves about the
state’s appeal process and to compile the information necessary for the appeal.
 Financial stress on families having to hire attorneys to help them appeal the state’s
decisions and maneuver the complex legal process.

March 4, 2019
  County Boards of Developmental Disabilities and the Service & Support Administrators
are often just as confused as families and have very limited knowledge about how to
support the family in this appeal process.
 Insufficient communication with families during the appeal’s process (examples: very
little or no advance notice from the state’s attorney with written background
information, no notice rescheduling appeal hearings, etc.).
 By the time families get through appealing their case, their loved one may be up again for
their annual re-determination for next year’s needed nursing services.
 Nursing agencies are fearful of continuing services for clients undergoing an appeal.
Families report that in some instances, they have served them with a 30-day notice due
to concern that funding/services will not get approved.
 Nursing Task Assessment has been changed several times within the last year and
families do not understand the reasoning for the changes. They question the relevance
of the changes and how this will further impact their loved ones’ care and access to
nursing services.
 Agencies are refusing to take on clients. They cite liability issues, cost for certifications 1,
2, & 3, and high turnover of staff.
 Annual reviews for current nursing care results in denials of nursing care when there is no
improvement in the individual’s medical needs or their overall standards of care are
unchanged.
 Families and professionals are confused about the different interpretations of the term
“medically necessary care” when determining the need for “continuous nursing care” as
opposed to “intermittent nursing care”. Medicare officially defines “medically necessary
care” as services or supplies that are needed to “diagnose or treat an illness, injury,
condition, disease, or its symptoms and that meet accepted standards of medicine.”

Possible solutions:

 Train families and SSAs to learn how to qualify for DODD and ODM Nursing services, using
a step by step process where everyone is given the same information.
 Create a task force with families and professionals who will work together to:
- develop possible solutions for improvements in accessing vital nursing services,
- review current assessments, tools, and processes
- afford people whose healthcare needs fall outside the current NTA access to vital
nursing services in lieu of complete denials
- look deeper into and uphold the use of delegated nursing as a choice, not as a
requirement
 Host trainings for families and professionals on the purpose of DODD’s Nursing Task
Assessment (NTA) and how it impacts the consumer’s request for nursing services.
 Require that a nurse observe and assess the person in need before denying nursing
services.
 Create ways that support the consumer’s health and safety with properly trained and
qualified home care staff.
 Recognize that Medicaid State Plan services may not meet the needs of these consumers.
 Invite families to work with policymakers to mitigate the DSP crisis in Ohio.

March 4, 2019
Respectfully submitted by the Ohio Waiver Nursing Coalition members to Jeff Davis, Director,
Ohio Department of Developmental Disabilities.

Members:
Tom Burns, parent
Kim Musgrave, parent
Kim Kelly, parent
Patty Lyons, parent
Amy Clawson & Lynne Fogel, Family Specialists, Ohio Family to Family Health Information Center
David Lewis, the Arc of Ohio
Dottie McLean, RN

March 4, 2019