SENATE MEMORIAL 81

52nd legislature - STATE OF NEW MEXICO - second session, 2016

INTRODUCED BY

Michael Padilla

A MEMORIAL

REQUESTING THE DEPARTMENT OF HEALTH AND THE HUMAN SERVICES DEPARTMENT TO SEEK PERMISSION FROM THE FEDERAL GOVERNMENT TO ADD RETT SYNDROME TO THE LIST OF CONDITIONS THAT QUALIFY A PERSON FOR DEVELOPMENTAL DISABILITY WAIVER AND MEDICAID SUPPORTS AND SERVICES.

     WHEREAS, Rett syndrome is a gene-related disorder and progressive neurologic disease in girls that progresses from a normal birth, and apparently normal psychomotor development during the first six to eighteen months of life, to a rapid regression in language and motor skills after a short period of developmental stagnation; and

     WHEREAS, the hallmark of Rett syndrome is the loss of purposeful use of the hands, replaced by repetitive stereotyped hand movements; and

     WHEREAS, screaming fits and inconsolable crying are common by the age of eighteen to twenty-four months; and

     WHEREAS, additional characteristics include autistic features, bruxism, episodic apnea or hyperapnea, gait ataxia and apraxia, tremors and acquired microcephaly; and

     WHEREAS, following this period of rapid deterioration, the progression of the disease slows, with girls developing dystonia and foot or hand deformities as they age; and

     WHEREAS, ninety percent of those with Rett syndrome suffer from seizures; and

     WHEREAS, girls with classic Rett syndrome typically survive into adulthood; and

     WHEREAS, there is no cure for Rett syndrome; and

     WHEREAS, management of Rett syndrome focuses on optimizing the individual abilities of the affected person and providing psychosocial support for the family of the affected person; and

     WHEREAS, persons diagnosed with Rett syndrome are not currently considered eligible for services and supports under New Mexico's definition of developmental disability approved by the federal centers for medicare and medicaid services in the state's developmental disability waiver application;

     NOW, THEREFORE, BE IT RESOLVED BY THE SENATE OF THE STATE OF NEW MEXICO that the department of health and the human services department be requested to seek approval from the federal centers for medicare and medicaid services to add Rett syndrome to the list of conditions that qualify a person for services and supports under the state's developmental disability waiver program and the state's medicaid program; and

     BE IT FURTHER RESOLVED that, on or before August 1, 2016, the department of health and the human services department report to the legislative health and human services committee on the status of their efforts to add Rett syndrome to the list of conditions that qualify a person for services and supports under the state's developmental disability waiver program and the state's medicaid program; and

     BE IT FURTHER RESOLVED that copies of this memorial be transmitted to the secretary of health, the secretary of human services and the chair and vice chair of the legislative health and human services committee.

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