I originally sent this to RJK Jr.'s teamkennedy.com and wanted to share my thoughts here:
"I have a 20 year old daughter with severe autism and intellectual disability. I also have elderly parents who occasionally need care, but are fortunate to remain relatively independent for now. I, along with others in my family, have suffered from mental health issues, past and present.
I have done my time in the (for me) useless halls of 12 step programs, 5-day inpatient detoxes, and similarly short term, inpatient mental health programs. What eventually saved me and put me on the right track was realizing that I was it. No one was coming to save me.
My daughter cannot save herself. She has received decent care in the one facility in Maine that can take her when she is in mental health crisis. That facility - last I heard in 2018 - had only 12 beds in its inpatient developmental disability unit.
My parents have had serious health crises and did stints in medical rehab facilities after serious hospitalizations. My stepfather is a Vietnam vet and I still had to fight to get him home health services, which are a godsend. The hospital wanted to send him home to his wife who was 70 and in the midst of stage 3 esophageal cancer treatment.
I am concerned that The Centers for Medicaid and Medicare Services and the Civil Rights Division of the DoJ have pursued a relentless policy for years of deinstitutionalization and privatization of services. This policy has been promoted under the guise of civil rights, with the misleading argument that congregate care segregates people with I/DD, the mentally ill, and the elderly. We still need congregate care. We just need to be judicious with it.
So many of our homeless are mentally ill and addicted. It is not a kindness to allow them to live on the street, committing crimes for drug money and endangering their communities with communicable diseases from lack of healthcare and basic sanitation. It is not a kindness to communities to allow the mentally ill to choose whether to seek treatment if they wind up shooting up a concert, theater, or school. It is not a kindness to communities to cede their public spaces to criminality and other unsafe behavior. It is not a kindness to our school children to keep known predators in school because removing them for unsafe or illegal behaviors is seen as racist in far too many cases. I do believe these kids that prey on others need treatment. But failing treatment, many of these kids, and the addicted homeless, need jail. They can get rehabilitation there. Public health should include expecting all Americans to behave decently in public. Our public spaces should be safer. Decriminalization is permission. Do we want to give permission for addiction, for selling illegal substances in schools, for public drug use, for loitering in public spaces and creating health hazards and excessive use of first responder services, for theft, etc.?
The situation is more nuanced for those with disabilities, including intellectual disability and autism, and the elderly. Our current care system is dependent on the free labor of women and the poorly paid labor of direct support professionals (DSPs) in home and community settings.
This system is beyond sexist. It is overtly misogynistic. Women with severely disabled children are often unable to work outside the home due to the lack of available services in the community. Daycare isn’t just expensive. It does not exist for those of us with severely disabled children. Public schools are expected to integrate our children without ever laying hands on them, or “secluding” them from others when they are actively dysregulated. This is as insane as allowing drug dealers to take over high school bathrooms because school officials can’t kick them out without running afoul of well-intentioned laws meant to stop the school to prison pipeline. Unfortunately, our kids can be dangerous, through no fault of their own in many cases. They will need restraint and they will need seclusion in a hectic, public school environment. They need a much more highly structured environment to access their education, and much of their education needs to focus on activities of daily living: dressing, bathing, toileting, cleaning, a healthy diet, movement, etc. Structure, repetition, a focus on physical health, and working with actual professionals is essential to their long term ability to remain safe and healthy.
When they become adults, our kids still need that structure. They still need their living skills reinforced. Many of our kids have medical issues that need on-going care. The Medicaid waiver homes that are replacing intermediate care facilities for the intellectually disabled (ICFs) are staffed by women and minorities. They are poorly paid and poorly trained in the majority of cases. Now, they are often - as in a third of DSPs nationally - “migrant” labor. They are not U.S. citizens and they frequently do not speak English well enough to do their job. They cannot advocate for their frequently non-verbal or intellectually disabled clients at doctor’s visits, for example. The private corporate Medicaid housing providers use cheap, unskilled labor and various rental schemes to turn a profit. So, here you have an example of misogyny, racism, and a national security risk. A triple threat.
States prefer this arrangement because state-run group homes are expensive. They employ state workers with pensions and benefits who are professionally trained and paid decently. Most states are actively trying to close their ICFs, and portraying this move as altruistic. We see how well that has worked with the mentally ill homeless population. We closed the mental institutions without replacing that care and, now, they are in the streets. The autistic and intellectually disabled are probably already among them, but I believe we are going to start seeing some truly heartbreaking examples of man’s inhumanity to man on our streets soon as our kids join the homeless because nowhere can handle them and their needs.
These homes are spread out over a large geographic area with little oversight. Abuse and neglect are rampant. Clients requiring 24/7 oversight elope onto the streets. Clients are beaten for their behaviors related to their intellectual disability and autism, behaviors they are no longer receiving any treatment for, though they are related to medical conditions. The Boston Globe has had a number of articles on this. I can provide links.
Recently, I have begun seeing in Massachusetts a push to keep the elderly in their homes, and even to push elders in nursing facilities back to community settings. Where!?! Massachusetts has a housing crisis. Those elders wouldn’t be in nursing homes if they had anywhere to go in the first place. Many of these facilities are also corporate-run, for-profit and employ migrant labor to keep costs down. Yet, their costs are too expensive for state Medicaid programs.
When homes for the disabled or elderly are cited for neglect or abuse, which probably isn’t often enough, they are closed rather than deal with the problem. We need to start confronting these problems and determine how to make a cost-effective, appropriate continuum of care for patients.
Not everyone can be served in community settings. I believe we need to better triage our care of the disabled, mentally ill, and elderly to meet them at the level of care they need at a given time. We need to find ways to save money on those whose needs are less severe, so that we have it for those who legitimately cannot be cared for other than in an institutional setting.
I believe we need to get away from this notion that larger group homes (which states will claim are “institutions”) are evil. We need economies of scale for those with lesser disabilities that could make do in an assisted living, dorm type of environment. Lower staffing requirements, no needs for active nursing care, etc.
Americans are used to the idea of private homes and self-contained apartments. But that is not always the case even now and hasn’t always been the case. Remember boarding houses where you could rent a room? Many people could use that economy now, and some do rent a room in someone’s home. 4 or 5 people rent apartments together and share common space. Our college kids live in dorms with shared cafeterias, public spaces, and bathrooms. Some of our elderly live in assisted living facilities or nursing facilities that already share baths and have food service. The mildly disabled and elderly could be housed in facilities that are being decommissioned from earlier uses: rehabbed hotels, closing academic institutions’ dorms, rehabbed apartment complexes. These facilities are already in community settings, often with access to public transport. This is not segregation. It is economy. And who is the ableist butthead who decided that integration only counts if you are hanging out with the “normal” people? What is “normal” anyway?
We need to recognize that the families caring for elders and the disabled at home are saving the system money. Toss a portion of that savings their way, and make it federal policy that overrides the states. Massachusetts pays a pittance to family caregivers, and it expects those caregivers to give up their guardianship to receive even that. They are asking for caregivers to cede control of making the decisions that make their life work, while saving the state a ton of money, and being paid an insulting wage for the “privilege.” Massachusetts pays non-guardian family caregivers $21k a year, I believe. In Maine, it’s over $50k. Maine. Maine is a much poorer state. Massachusetts’ disability care is an embarrassment and the Department of Disability Services should be audited and probably replaced entirely. It cannot be saved.
An individual in a nursing facility can cost $10k a month or more. Remember, those facilities are usually for-profit entities taking Medicaid for every cent they can. This is why states are starting to push for the elderly to go back into community settings. If we pay a relative $5k and train them, how much money can we save while keeping a caregiver financially secure and a patient cared for by loved ones? Reform social security so that caregivers have access to retirement and disability, regardless of their marital status. You will have more family members, possibly even male ones, willing and able to take in relatives needing care.
We also need to get rid of the idea that eradicating autism is genocide. You are aware that autism is a garbage pail diagnosis with a spectrum so broad as to be meaningless. It is also defined by social scientists, not medical ones. It is based on behaviors which can result from any number of medical conditions. An autism diagnosis hides a multitude of societal ills. My daughter has a Level 3 autism diagnosis. She is not autistic. She is brain-damaged. She has encephalomalacia in her left parieto-occipital region along her occipital horn. She is 20 years old and we finally found out about the brain damage this past September because I kept pushing. We do not know when the damage started. It could be related to birth trauma. It could be related to a long-ignored and on-going autoinflammatory condition with high platelets, white blood cells, high CRP and sed rate, intermittent anemia, and GI lesions. It could have been her DTaP shot at 9 months, which coincided with her regression into autism. Doctors do not do extensive investigation when handing out autism diagnoses because it is forbidden. You cannot imply autism might be brain damage, inflammation, or vaccine injury. It would be politically incorrect and career suicide. This needs to change. Doctors need to be free to practice medicine without politics involved.
Change starts with pushing back on the notion that autism is never a disability. Change starts with recognizing that there are people who cannot function safely in our communities independently. There are some people whose level of disability requires 24/7 support to access their communities. Medicaid waiver homes for the disabled, pushing the elderly out of nursing facilities, and accepting homeless drug addicts begging at every intersection are not the answers. We need to maintain access to a humane, professional continuum of care with adequate oversight, while finding ways to provide care to those with lesser needs without relying on misogyny, racism, illegal immigrant labor (that perpetuates our border crisis and constitutes a national security risk and jeopardizes public health), and the ableism of denying the existence of those with severe autism and intellectual disability. "
That was the original body of the letter. It contains several suggestions to improve the continuum of care for the elderly and disabled and to improve the financial security of family caregivers. I would be interested in helping others to come up with a comprehensive plan to fight the erosion of care of those with intensive care needs. Our elders and our adults with profound autism and intellectual disability should not be warehoused with recent migrant who cannot speak their language, have little training, and are unable to advocate for their clients in an emergency. Placing these individuals with their families should not mean that those families then have to exist in poverty, with no access to SSI/SSDI themselves should they need it.