The Dire Limits of Health Care

In the fall of 2010, Raul Carranza arrived on the campus of the University of California Los Angeles by way of Eastlake High School and Southwestern College, pursuing a psychology degree. By the following January, he had been forced to withdraw and return to Chula Vista to live at home with his parents and younger brother.

Carranza hadnt been kicked out of school due to academic or disciplinary issues. Instead, on his 21st birthday, Medi-Cal cut his services, which included round-the-clock nursing care that he needs because he has muscular dystrophy.

Muscular dystrophy is a progressive disease. It gets worse as you get older, Carranza tells me, speaking with the assistance of his afternoon nurse Laura, when I visit his home in early January.

Carranza has been diagnosed with multiple forms of muscular dystrophy, a name thats used for a number of genetic diseases that cause muscle weakness and wasting, usually of skeletal muscles but sometimes of muscles that enable breathing. Noneof the textbook definitions of the various dystrophies havehit precisely on the symptoms from which Carranza suffers.

Carranza was diagnosed with the disease when he was 2 years old. He says his parents were told he was unlikely to live another 12 years. When he was 14, he had a tracheotomy to replace a breathing apparatus that covered his face with tubing that is attached to his neck. The operation has left his speech raspy and nearly inaudible.

About the time of his operation, his insurance was canceled because he had reached the maximum lifetime benefit. Medi-Cal, which is Californias version of Medicaid, a health-insurance program for low-income individuals, then began to provide nursing care through the Home and Community-Based Services Waiver program, set up to waive certain Medicaid requirements for people who would otherwise require institutional care.

Carranza says that underthe current Medi-Cal structure more money is available for minors than for adults, though he alleges that the program is looking for any excuseright now to cut funding from a lot of people.

I have lost the ability to walk, move my arms, and breathe, Carranza says. Despite this,he attended community college and UCLA. He was in the process of changing his major to computerscience when Medi-Cal changed his classification from acute, meaning round-the-clock care was paid for, to sub-acute, which pays for only 11 hours of nursinga day. He wasforced to return home and seek private insurance.

Photo by Alan

Raul uses a USB ...

Link:
The Dire Limits of Health Care