Please oppose the Senate health care bill.

     If it becomes law, millions of Americans will lose health coverage because it will be priced out of their reach.  The CBO predicted 23,000,000 under the House bill, and the Senate bill is worse.  This will result in thousands of preventable deaths in the near future … deaths like Amy Schnelle’s. Amy Schnelle was 15 when she began to have seizures. She finished school and went to work in a factory, but she continued to have debilitating seizures, and eventually she couldn’t work any more. She went on Medicare. After 15 years of seizures — half her life — she got them under control. So she was removed from the Medicare rolls. She tried to work with the drug companies and several did help her, but one did not, and she began to have seizures again. She went to her Congressman and he helped her get back on Medicare, but she died following a seizure before the meds got her condition back under control. Please oppose the bill to prevent what happened to Amy Schnelle from happening to your constituents.

     If it becomes law, it will be even harder for many Americans to get out and stay out of institutions. Geraldo Rivera uncovered what was going on at Willowbrook State School back in the 1970’s, and Willowbrook was not an aberration. Institutions are notoriously understaffed, the employees are underpaid, and the lives of people in them are run according to the needs of the administration. At Willowbrook, for instance, because there were so few staff, children who could not feed themselves had food poured into their mouths at a rate of 3 minutes per child per meal. This resulted in several deaths from choking and aspiration pneumonia every month.  Please oppose the bill to prevent what happened to the children of Willowbrook from happening again.

     Nursing home residents struggle to cope with poor staffing and lack of resources as well: I was in nursing homes this winter, ones the hospital said were good. I was in one to get physical rehab so I could get strong enough to return home and care for myself. “You can have as much therapy as you can tolerate,” one assured me, but physical therapy was capped at 3 20-minute sessions a week. I atrophied. In another, my roommate, a neighbour from Chicago’s South Side whose son, a professional, visited her every day, was confused for hours until I realised the staff hadn’t noticed she was blind. I had been admitted specifically to certain places because I needed lymphedema care, but none of the facilities I was in had the staff or supplies to provide it, and I ended up back in the ER twice as a result.  Please protect your constituents from what is happening to the elderly of Chicago’s South Side by opposing this bill.

     And that is when everything is going “right.” A distressing number of Indiana nursing home employees posted images of patient abuse on Snapchat in 2016.  How many more cases were never discovered? Esmin Green died of blood clots after she had been admitted to a health care facility but waiting for a bed, writhing in front of a surveillance camera while nobody noticed. Just recently another abuse case was exposed at the Judge Rotenberg Center, where staff had been abusing a disabled resident — this at a facility where repeated electric shocks are standard operating prosecute. Disabled Americans have fought to get out and stay out of institutions in order to live good lives, go to school, hold jobs, raise families, pay taxes, and contribute to our communities — and it is cheaper per person to support people in their own homes to institutionalize them, but states prefer institutional options.  Michigan employee and homeowner Chris Meadows just learned that the Medicaid services he needs to stay free have been cut. He has lived on his own since college. I personally know many disabled people who have good lives and who make their communities better places because they have services through Medicaid. Please oppose the bill to prevent what is happening to Chris Meadows from happening to your constituents.

     In the last 35 years or so, IQ scores for people with Down Syndrome have gone up 20 points and they are living decades longer.  Today Americans with Down Syndrome are doing all the things other Americans do. This is not due to changes in people with Down Syndrome or to medical developments: it’s due to people getting food services in the community rather than being institutionalized.  Please help disabled Americans continue to make these gains by opposing the bill.

     If it becomes law, many people will not even be able to stay in nursing homes.  They will go home, where their families, already struggling, will be unable to care for them.  This is already happening; as older Americans and those with pre-existing conditions face higher premiums they will be forced out of the health care sytem.  Joey Bishop was 18 when he died. He had muscular dystrophy, as do many leaders in my community.  But Bishop lived with a family that did not care for him. Bedsores are largely preventable and treatable, but Bishop’s were not treated and he developed infections and became septic … and died.  Although his family is charged with deliberate neglect the same thing will happen to many of your constituents if this bill becomes law. Please oppose it.

     If it becomes law, children with disabilities will lose access to the supports in school they need to reach their full potential. Developmental windows will close. An easy place to see the consequences of lack of education is in the Deaf community. Many deaf children today in oral programs never fully master any language at all because they do not learn one in the critical language-learning phase — because they are denied access to sign. Blind children who are not taught Braille often never learn to read as well as they should; it cannot be learned as easily in adulthood. Without the supports Medicaid provides to schoolchildren a large number of the current generation will be unnecessarily limited for the rest of their lives.  Please protect your constituents’ children and your state’s future and oppose the law.

     If it becomes law, people who want to get off drugs, people like Rush Limbaugh and high school athletes who have been prescribed painkillers and my own mother and grandparents, will have an even harder time finding treatment. They will suffer and die, and their family members will suffer. The nature of addiction is that willpower is not enough. Please do not abandon these desperate people. Please oppose the bill.

     The ACA is not perfect and there are legitimate political disagreements between you and me over how best to govern this country. I understand you are going to do things I disagree with because you believe in them and I respect that. But this is different: the suffering and death and devastation that the bill you are now considering will rain down on the 10% of uninstitutionalized Americans with severe disabilities — a community any American could join at any moment through no choice of their own but from accident, illness, age or act of God — not to mention the entire institutionalized population are unimaginable. If it becomes law, it will hurt and kill people. Millions of people. It will impoverish families for the crime of a baby being born with a heart condition or a child getting leukaemia or a parent being injured at work or a grandparent developing Alzheimer’s.  It will drive people to suicide, as Oregonians who cannot afford cancer meds are choosing suicide today. Please, please do not do this to America.  Please do what is right for your people this week and oppose the health care bill.

Sincerely,

Cal Montgomery