If proposed constitutional Amendment No. 1 is passed, it could be detrimental for people with ALS who rely on in-home care services.
The proposed amendment protects Medicaid-funded primary care institutions, such as nursing homes, from state budget cuts, leaving other critical services unprotected and more vulnerable to cuts. These critical services are vulnerable because they are some of only a few parts of the state budget that are not protected during cuts. These services include home and community-based services that assist people with disabilities in remaining in their own homes, individual and family support services for people with disabilities and hospice — all services that are heavily relied upon by persons with ALS.
ALS is horrific. Worse than your worst nightmare. It robs people of the ability to move, trapping them inside a body they no longer can control. People describe it as being buried alive. There is no treatment. No cure. Only death in an average of two to five years.
People with ALS have little hope, and an overwhelming majority of people with ALS want to live out the disease in their homes with their families — and this is evidenced by the number of patients who rely on the ALS Association Louisiana-Mississippi Chapter to assist them in doing just that. People with ALS will lose everything — their ability to walk, talk, eat and breathe. At the very least, people with ALS shouldn’t have to lose their ability to fight this horrible disease in the comfort of their own home.
In addition to the horrible physical limitations that people with ALS will face after diagnosis, this disease costs an average of $250,000 a year in the later stages of the disease. If funding to in-home care services is cut during times of fiscal crisis, more costs will be shouldered on people with ALS and their families.
Vote no to constitutional Amendment No. 1 — because there’s no place like home.
executive director, The ALS Association Louisiana-Mississippi Chapter