SENATE JOINT MEMORIAL 2

53rd legislature - STATE OF NEW MEXICO - first session, 2017

INTRODUCED BY

Michael Padilla

A JOINT MEMORIAL

REQUESTING THE SECRETARY OF HEALTH AND THE SECRETARY OF HUMAN SERVICES TO SEEK FEDERAL AUTHORITY TO ADD RETT SYNDROME TO THE LIST OF CONDITIONS THAT QUALIFY INDIVIDUALS AS MEDICALLY ELIGIBLE FOR THE MEDICAID DEVELOPMENTAL DISABILITIES HOME- AND COMMUNITY-BASED SERVICES WAIVER, ALSO KNOWN AS THE DD WAIVER.

     WHEREAS, Rett syndrome is a neurodevelopmental disorder that affects one out of every ten thousand to twelve thousand girls, only in rare instances affecting boys; and

     WHEREAS, according to the department of health, there were twenty-six thousand two hundred forty-two children born in New Mexico in 2013, of whom it may be assumed that roughly one-half, or approximately thirteen thousand one hundred twenty, are girls; and

     WHEREAS, it can therefore be concluded that there is at least one girl born in New Mexico with Rett syndrome every year; and

     WHEREAS, Rett syndrome is an intellectual and physical disability with no cure that renders those with the syndrome one hundred percent dependent for activities of daily living; and

     WHEREAS, while each individual's symptoms are unique, most individuals living with Rett syndrome are unable to speak and have epilepsy, scoliosis of the spine, anxiety and other behavioral conditions, gastrointestinal issues and difficulty with motor skills, eating and sleeping; and

     WHEREAS, individuals with Rett syndrome require assistance twenty-four hours a day, seven days a week, with a great many supports and services, including physical, occupational and speech and language therapy; orthotic braces; eye-tracking and speech-generating devices; diapers; and special nutrition; and

     WHEREAS, the federal social security administration has recognized Rett syndrome as rendering applicants for social security benefits who are otherwise eligible for social security disability benefits as medically eligible on the basis of their condition; and

     WHEREAS, applicants for the DD waiver who have Rett syndrome are ineligible for the DD waiver on the basis of having Rett syndrome without another qualifying condition such as an intellectual disability; and

     WHEREAS, the expense of the twenty-four-hour, seven-day-a-week care and the many supports and services renders Rett syndrome care prohibitively expensive for most families; and

     WHEREAS, individuals with Rett syndrome must have these supports and services to avoid permanently losing the abilities that they do have; and

     WHEREAS, most commercial insurers offer only limited or no coverage at all for Rett syndrome supports and services; and

     WHEREAS, without DD waiver eligibility, individuals with Rett syndrome and their families in New Mexico face an inability to obtain essential care or face financial destitution;

     NOW, THEREFORE, BE IT RESOLVED BY THE LEGISLATURE OF THE STATE OF NEW MEXICO that the secretary of health and the secretary of human services be requested to seek federal authority to add Rett syndrome to the list of conditions that qualify individuals as medically eligible for DD waiver supports and services; and 

     BE IT FURTHER RESOLVED that the department of health and the human services department be requested to report on the status of their efforts to add Rett syndrome to the list of conditions that qualify individuals as medically eligible for DD waiver supports and services to the legislative health and human services committee by December 1, 2017; 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 of the legislative health and human services committee.

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