Note: This is a compressed overview that assumes a reader to be well versed in the current disability legislation and its jargon.
The theme of today is “Community for All”. It is embraced both by the advocates and not surprisingly by the Institutions themselves.
A bit of important History: The movement of institutionalized people into community began shortly after the horrific exposes [Willowbrook and other] in 1970s. Moving into community allowed institutions to put a new face on their operations thus deflecting the governmental scrutiny and the public discontent while at the same time maintaining and even increasing their profits. The movement was initially embraced by the States, but it cooled off due to increased mortality of inmates and the abuses that were hard to control.
It took 20 years for the Americans with Disabilities Act of 1990 to request that service be provided in the “least restrictive environment”, and another 10 years for the ‘celebrated’ Olmstead v. L.C. decision that people with disabilities have a right to receive state funded supports and services in the most integrated setting appropriate to the needs of qualified individuals with disabilities“. This combined language subsequently permeated all the legislative acts in regard to disabled people.
To note: this combined language effectively reverted to the original pronouncement of 1985 Supreme Court Decision [Cleburne v. Cleburne] in regard to IDD people [who at a time were still referred to as Mentally Retarded] – which ruled that – “[they] have the right to live in the least restrictive setting appropriate to [their] individual needs and abilities”.
This is what governs us [IDD] today and apparently it is not an issue for our flagship disability organizations [you have shown no discontent]. This language however is what subverts our fight for Freedom. To give you a perspective of how grotesque, unjust, and damaging it is – we ask you to read this far reaching postulation where we substitute ‘they’ for other marginalized people who were similarly persecuted in our near past: POC and LGBTQ people:
“People of Color have the right to live in the least restrictive setting appropriate to their individual needs and abilities”. Do we remember what these setting were yesterday [Slavery]. Does it sit well with you POC?
“Gay people have the right to live in the least restrictive setting appropriate to their individual needs and abilities”. Do we remember the fate of those who were discovered or came out [prison and mental institutions]. It is still menacing us. Does it sit well with you LGBTQ community?
We bring these two perspectives not to offend but to open people’s eyes and to tell you – You are among us and We are among You!
WE ask YOU – who were similarly persecuted and fought for your rights – to Stand with Us.
We ask you to be an Abolitionist of our time!
The Disability Rights Community fought many battles and won them when we stood together. We lived through a ‘WHEELCHAIR REVOLUTION’ – Thank you ADAPT of that time for making it happen. We had ASAN’s ‘Nothing About Us Without US’ that united us [Autistics] and who as a fledgling organization in 2009 came strong and in an uncompromising report to the government – Keeping the Promise: Self Advocates Defining the Meaning of Community Living – had defined and requested the simple freedoms that we must have as do all the other people, including the most important freedom of all – “We must be free to come and go”. Thank you ASAN of that time – you had an uncompromising Mission and would accept nothing less.
Yet today we find our flagship disability organizations [now recognized and invited to the table] sitting on a high porch, their base disillusioned, the movement fractured, as they collaborate with the industry and compromise on ‘our behalf’.
Here is a compromised giveaway [to the institutionalization industry] on what community settings are to be – [Community First Choice /1915k] – there “Freedom to come and go” is replaced by the “Right to Autonomy and Privacy”; this is how it reads: “Each individual has privacy in their sleeping or living unit: — units have entrance doors lockable by the individual with only appropriate staff having keys”.
To give you a perspective of how this works we ask you to entertain a supplicate arrangement – “prisoners may be allowed to lock themselves in a cell, while guards are having a key to open it. Note that prisoners are not provided with a key to open the cell nor do they have a key to the prison door“. This is what we get.
Let us look at what our eminent organizations are trying to accomplish today: There is MFP [Money Follows People Act], and the DIA [The Disability Integration Act, S117, HR555] – “that will enshrine the right to community into federal law”. But let us look under the hood of these bills: The DIA endeavors to remedy an issue with “lockable doors” – correcting this as – “(III) in which each individual with an LTSS disability living at the residence— (aa) has privacy in the individual’s sleeping unit, including a lockable entrance door controlled by the individual” – does this mean a freedom to come and go? It does not – it is a compromise that once again accepts the institution [in the midst of community] – a compromise that once again sells out the IDD folks. This is followed by Section 5.10 [Transition] – where we find that the states can take 12 years to begin to implement the transition. The transition for this plan is 12 years! Not 12 days, and not even 12 months – it is 12 years. What good is this bill for us [IDD] we ask?
The Money Follows Person (MFP) gloriously renamed by Schumer as the “Empower Care Act” is asking to change 90 days to 60 days, i.e. in order to get out of the institution a disabled person must first spend [not 90] but only 60 days in the institution [same goes for the elderly in a nursing home] – this is like asking a person in a wheelchair to wait [not 90] but only 60 days for a bus that will bring you home. It is another compromise which for great majority of IDD people means that money would follow them from a congregate institution into a modernized institution [per a communal settings definition]. It is not surprising that Autism Speaks is a great supporter of this act.
We must not deceive ourselves – these are essentially flawed policies of compromise and concealment and as history shows they lead nowhere. Let us understand clearly that just as it was with Slavery there is only one fight worth fighting [while our people are being institutionalized at an alarmingly growing rate] – it is the fight for the restoration of our Freedom!
Involuntary Institutionalization is a denial of Freedom – a vital civil right of every person, addressed repeatedly by our Constitution and guaranteed both by the 13th and 14th Amendments of our Constitution. Per the 13th Amendment of our Constitution – “Neither slavery nor involuntary servitude, except as a punishment for crime whereof the party shall have been duly convicted, shall exist within the United States, or any place subject to their jurisdiction”. The 14th Amendment of our Constitution guarantees that ” nor shall any State deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its jurisdiction the equal protection of the laws”.
Through Courts [on Constitutional Grounds] or explicitly by Legislative action we shall seek to abolish and to ban the involuntary institutionalization of innocent [disabled, mentally ill, and elderly]. There can be no compromise about Freedom. How our freedom can be restored in an orderly and gradual way acceptable to all is what we attempt to define and bring about in Project 2020.
To our eminent flagship organizations – in the recognition of your past achievements we ask you to join us in this direct and uncompromising movement. Get back to your true selves and stand with us.
Our call is extended to all the Disability organizations.
This is the time when we have to stand together.
Join us – become an Abolitionist!