I am married to Justin Garrett; a man who provides for his family, who works hard, and who strives to better himself despite the challenges presented to him. Justin has spinal muscular atrophy, a profound physical disability. He can move his right thumb and index finger, but none of the rest of his body. He works 40-50 hours per week as a salaried software engineer. I work from home to make sure I am available in case his waiver-services caregivers are unable to report to work. We pay taxes, contribute to society, and work hard. Sadly, because of this my husband will no longer be receiving his caregiving services through the New Opportunities Waiver. He is no longer income-eligible for Medicaid, and we are unable to afford the amount that will be required of us to continue receiving services. My husband cannot scratch his itches, cannot feed himself, cannot pick up his hand, cannot independently use the restroom. He cannot remove himself from dangerous situations. He requires care simply to survive.

I am hoping that you will assist with changing the policies that resulted in this egregious injustice. Medicaid establishes income limits based on the participant’s gross income. We cannot see or use a large portion of gross income. Because Justin was income ineligible, he was entered into the Home and Community Based Services Spend Down Program, which allows an applicant to continue their Medicaid coverage if they pay a portion of caregiving services. Unfortunately, this is also based on the gross income of the participant and does not admit deductions for such things as rent, vehicle payments (we have a new vehicle modified to Justin’s needs), or other necessary expenses. Due to the use of gross income in the spend down formula, the lack of deductions regarding other expenses, and the lack of alternatives, we are losing services that Justin has depended on for thirty years. I will now be his sole caregiver. My concern is if something should happen to me, Justin will not have any care. My thoughts are also with those individuals who do not have family to rely on as backup. These services are required to keep people alive.

Justin has paid taxes into a system that he is no longer able to reap the benefits from, even though it would cost more for the federal/state government, long-term, if he were dependent upon Social Security payments or if he were institutionalized. It is unconscionable that a productive member of society is unable to benefit from the assistance that he has paid into. Currently under the Medicaid spend down program we would be required to pay $1,815.00 per month (a third of our total net income) as opposed to if they used net income which would require us to pay $0 using their same formula.

Please consider these changes, as this is not an isolated problem. Since the Americans with Disabilities Act was enacted in 1990, people with disabilities have been able to enter the workforce with fewer hindrances, allowing people to work who could not before. The policies that Medicaid currently has in place have the potential to adversely affect everyone who has a disability, may become disabled, or may need services in their later years.