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BOBBY'S LAW
The Missing Link
The Missing Link
BOBBY'S LAW PROPOSAL
How to Protect the Caregiver Advocate who is providing clinical services that Insurance doesn't cover - but, is not considered part of the Clinical Team in a Residential Nursing Facility?
The Missing Link
The Missing Link
The Missing Link
BOBBY'S LAW
Acknowledges and Protects the
Caregiver Advocate who augments nuanced care for a rare unknown orphan disease processes as part of the clinical team ~ to assess the resident's status and assure continuum of care to attain Resident's highest level of functioning.
The Missing Link
BOBBY'S LAW
-Protects the non-clinical practitioner who discovers the nuances of a rare disease process through time, care and observatory care giving on the continuum;
-Expands the rights of Resident Rights Law (483.10), ADA and current proposed Essential Caregiver Bills to allow a non-clinical caregiver to participate with the clinical te
BOBBY'S LAW
-Protects the non-clinical practitioner who discovers the nuances of a rare disease process through time, care and observatory care giving on the continuum;
-Expands the rights of Resident Rights Law (483.10), ADA and current proposed Essential Caregiver Bills to allow a non-clinical caregiver to participate with the clinical team;
-Allows for the non-clinical person - access in an institution as a supportive person without clearance issues in a pandemic;
-Allows for an uncharted, rare accommodation for orphan diseases;
-Acknowledges the disability of one in a million, not one of a million;
-Addresses the grey area of how to clinical assess a decline based on an unknown disease process;
-Defines and documents the bridge care in
rare neuro-motor discourses in a care setting acknowledging that is not just supplemental, but Medical Nourishment*
*So many unknowns in a diagnosis- the amount of time spends with the patient, becomes a part of the treatment.
Bobby's Law Inspiration
Bobby's Story
Bobby's neuro-degenerative motor process is a mystery. From day one of his motor impairment, neurologists from both coasts could not figure out what the presentation of Bobby's rare condition. Genetic testing from Harvard came back inconclusive, and many rare-orphan disease tests came back negative from NYU. Throughout the journey, Bobby's care-giving wife has created stimulation therapies that help initiate his first step in motor processing, as the white matter on his brain lives in his occipital and parietal lobes. These individual based created neural-therapy modules have kept Bobby at his highest level of functioning addressing his verbal, fine motor and motor sequencing compromises. The daily repitition of the exercises she performs in partnership with his community rehab, has helped Bobby attain his highest level of functioning, prevented acceleration of Bobbby's disease degeneration, and triggered expanded neuro-pathways to work toward compensatory strategies Bobby to initiate movement, stand in a neuro stander and create automatic responses for one syllable words. The brain is elastic.
Currently, in a pandemic setting, the facility where Bobby resides does not recognize the neural-motor care that his wife provided. Because the practice is not documented anywhere, but in her own charting, as insurance doesn't cover it in combination that Bobby has an unprecedented disease process ~ it is impossible to currently clinically assess Bobby with modules that don't exist. This is making it impossible to reach her husband in person to execute the modules that were a daily part of his care, and essential treatment to prohibit his motor decline.
As Bobby's neuro-therapy is a rare Accommodation - Bobby's Law will address the services a non-clinical caregiver's gives to a resident living in a residential setting for the rare orphan disease processes that science has not addressed. Bobby's Law will validate the clinical essential care by the long-term caregiver of a rare disease process.
As Medicare is about to slash 9% in its spending toward speech, occupational and physical therapies, the acknowledgement of this augmented essential care, and it's clinical jurisdiction, is pivotal for the vulnerable and disabled populations to help maintain their highest level of functioning as we move forward in this pandemic.
Bobby's Law will acknowledge the essential medical care provided by the caregiver for clinical assessments by :
1) Care Modules Sheet by Admission
2) Monthly Updates Kept in Chart / Book in the Person Centered Care Plan
3) Attendance at Interdisciplinary Clinical Meetings to acknowledge day to day discourse.
About Bobby
A retired teacher who has been living with a rare neuro~degenerative disorder for over the past four years in a residential nursing facility without essential neural care from his care-giving wife, who provided the neural modules from day 1 of his disease discourse.