Overview – where we are going

Following in the Project 2020 Guideline we [the supporters of this project] will attempt to harness some important positive developments that came both as a result of advocacy as well as from the crisis of the systemic machinery of ‘Institutionalized Care’ itself.

The Coronavirus pandemic has desintegrated the structures of congregate institutionalization – unfolding with desertions, abandonment, and widespread fatalities. To a lesser degree the same is being witnessed in the residential “communal settings” [group homes, and other] for disabled.

Had these people voluntarily sacrificed themselves for the good of society – they would deserve a Medal of Honor, but most of the people who died there were there not of their own will – and when they died and continue to die as a result – it is our sin and our crime. It would not be surprising that Class Action suits by relatives would follow; this alone may effectively lead towards the demise and even liquidation of this flawed and troublesome industry.

The aftermath of pandemic will bring special scrutiny to this sector of our Health Industry questioning its legal foundations and machinery – and we must make sure to be vocal and to address [through public campaign and active advocacy] both its illegitimacy as well as its tragic effects on people [not only in Coronavirus time]. This is the time when we should address the “Involuntary Institutionalization” and its underlying legal structure head on!

It is important that we denounce not only the larger congregate institutions of the old type, but also the recent smaller institutions in so called “community-based settings”. These are the “community-based settings” where ‘freedom to come and go’ is substituted by vague ‘autonomy’ inside a lock-up. These settings represent a hybrid form of involuntary institutionalization which quietly promotes the spread of institutions into the communal environments. We must not let this pervasive parasitic organism to mutate and continue its spread.

It is important that our leadership understands this and acts accordingly. The mistakes that were made should be admitted and people responsible should own to it and apologize. This is the only way forward, because being silent about what “communal settings” really mean for IDD people is to betray them. We ask the leadership of disability organizations who truly represent Disabled to make every effort to understand it clearly and act accordingly.

Lastly we should understand that the post pandemic times present great opportunities; from the redesign and rebuilding of infrastructure in areas of architecture, transit, work places, education, health care, and leisure – to the rise of automation and assistive technology in many aspects of life. We have people with great talents, vision, and ideas – let us take part in these opportunities and let us benefit from it.


Below in very general way we identified the main areas of importance – these are all interconnected areas, and while each opens distinct paths to freedom and equality – every part is instrumental in achieving this multifaceted goal.

We begin by listing them all and elaborating on most in the subsequent notes.

  1. The Abolition Campaign [Return our Freedom] – a grass root campaign initiated, directed, and carried out by Autistic and Disability community.
  2. Rights of the Family [Project 2020 guideline] – the right of the family to serve their own. Challenging the family members exclusions.
  3. Rights of the Child – right to childhood, restoration of play and self-direction. Addressing segregation, isolation, captivity, and diminishment of IDD children within the family and in the society.
  4. Money Goes to Person – An activist campaign directed at legislators and regulators and extending ABLEnow approach to allow an individual a direct and instant access to the funds of their SNTs, as well as the various governmental programs that the individual is entitled to.
  5. Access to your money and services engineered in universal manner. Developing assistive software and technology to empower the individual [IDD] in accessing their resources.
  6. Addressing the Special ED – Desegregation, demonetization of ABA, and promotion of self-direction is necessary to reverse the cultivation of Disability by Special Ed. We seek access to education that is universal and equitable [no more no less]. Promoting a paradigm of “Educational Grounds“.
  7. CARES Act [War on Autism act] must be redirected. Instead of seeking cure and prevention these funds should be used to research ways of transitioning people in institutions to their gradual integration into society.
  8. Access to work that is universal and equitable in every way including pay. The sheltered workshops and subminimum wage can’t continue for another 10 years.
  9. Transition to Community [where currently the incentives are given to the States to transition institutionalized people from the congregate settings to the communal-settings] – our position is that the Transition should be from both the congregate institutions and from the institutions in community-settings – and this transition should be to Home-based settings [the settings where an individual is in full control of their home [shared or not] and their own comings and goings.
  10. Specific Legal Initiatives [of Project 2020] – The Autistic [IDD] Defense Fund and The Generosity Trust.
  11. Promoting Archipelago Autistic (Ocate Cliffs, GAIA, and other autistic retreats and intentional communities) regardless if they are in the country or in the community. What is essential is not where these places are and not even if these places are not integrated but whether people live there of their own will and can come and go as they choose.
  12. In regard to 2 trillion plus dollars of the stimulus which are envisioned to rebuild the country’s infrastructure – we need to convey to the public that not only the hardware infrastructure but also our social fabric and social infrastructure is in need of rebuilding.

The following elaborates work needed in these areas:

  • The Abolition Campaign [Return our Freedom] – this grass root campaign [directed to and carried out by Autistic and Disability community] is a movement to abolish the practice of Involuntary Institutional and Guardianship.
    We must make it known by all that this practice is a form of human enslavement that results in a loss of Freedom, Rights, and Property inflicted on the innocent person without just cause [but singly for a reason of divergence and disability] and this is a violation of our Constitution [13th and 14th Amendments] and has no place in our society. To this effect we’ll be also seeking help and participation from The Disability Rights Education and Defense Fund (DREDF) and by initiating the creating an affiliated with DREDF – The Autistic [IDD] Defense Fund [see below].

    We must have Freedom ‘to come and go’ of our own will – unhindered, unsupervised, free of harassment, in towns, villages, hamlets, and cities, at home and work, and anywhere in the country open to the public. The Abolition Campaign represents our fight for Civil and Human Rights of divergent and disabled people.

    It is important that disabled community comes out and stands as one on behalf of those of us who are involuntarily Institutionalized!
    [We seek volunteers to develop strategy and tactical plans and who would act to execute it]

  • Rights of the Family [Project 2020 guideline] – the right of the family to serve their own. Family is the core of our society, it must be strengthened; without family we become an institution. We need to bring forth a momentum for a complete reversal of the regulations [imposed by States] which currently exempt family members from being paid to provide LTSS care – a complete reversal without exceptions – thus also allowing spouses to be paid for looking after disabled spouse, and parents to be paid for looking after their disabled children regardless of age.

    The recent giveaways [CDPAP NY and other] in regard to the family members who were previously almost uniformly excluded [on unquestionable grounds] from being allowed to serve their own in need of long term care / LTSS or other care and to be paid as do everybody else – has brought into focus the duplicity of these exclusions, exposing it to legal scrutiny – and this necessitates an inquiry and a challenge as to the purpose and the justification of these exclusions, which in their totality are becoming clearly seen as serving only the ‘special interests’ and not the individual, nor their family, nor the State, nor the taxpayer, nor the society.

    This can be addressed by challenging these restrictions in Court as well as all other approaches that we should explore [such as advocacy, activism, and other].

    When family can be compensated for serving their disabled members – it would also bring an important measure of importance to the disabled person. This is essential to breaking the stigma of disabled person being a ‘a burden’ to a family, and it is empowering to a person especially in view that they make a decision of who their support might be. We should fight for getting rid of all the family exclusions, as well as for the decent pay that this work deserves. This simple change would allow most of people with IDD to avoid becoming institutionalized.

  • Rights of the Child of any age. The path to Freedom necessitates a restoration of the rights of all the members of the family. While we seek the restoration of the rights of parents, we must not be silent about the fact that it is the parent who is ultimately responsible for decisions that lead to a loss of freedom by their child.

    We must fight both for the rights of parents and the rights of a child within and outside of family – both need to be restored. It is the absence of these rights that leads to the tragedy of Guardianship and Involuntary Institutionalization. The fight for the rights of parents and the rights of the child is really the same fight – it is a fight for people whose human rights are denied them by those who had been given power over them; it is a fight for their Human and Civil Rights.

  • Money Goes to Person! Access to your money, whether earned by you, or donated to you, or provided to you by government assistance should be available to Disabled [IDD] person in the same universal manner as is enjoyed by none-discriminated members of our society. This is where we need to concentrate our efforts because a direct access to money translates to many dimensions of freedom.

    We should begin with emphasizing the inadequacy of MFP – because it is a piece of legislation that has become exposed [the suggested changes from 90 days to 60 days bring questions of impropriety and unmasked special interest influence] – why should one who qualifies for receiving healthcare and services first spend 90 or 60 days in the institution just in order to receive the funds they would need to stay out of it? Why should it be 90 days and not 60 or 30; and why should it not be struck out at all. The answers to these questions are obvious – it is the enrichment of the institution and it’s grasp – and in the post Coronavirus time their hold on the money will become indefensible.

    Once the requirement for Institution stay becomes nullified, it will be much cheaper at this point that the money are distributed to a fiscal custodian [commonly a Bank] as is universally done; this saving tremendous amounts of money for the State and effectively resulting in Money Goes to Person arrangement!

    That’s what we should ask for – nothing less! The practical approach of bypassing the morass of state bureaucracy and effecting it Nationwide may be done in a manner similar to the way ABLEnow organization operates nationwide as an Agent of the State.

  • Access to your money and services engineered in universal manner. We are seeking to put together a team to develop assistive software and technology that guides and assists the individual [IDD] in accessing their resources both the universal and dedicated services -while ensuring the proper usage of funds and resources and providing the required governmental reporting. A part of it is extending ABLEnow approach to allow an individual a direct and instant access to the funds of their SNTs, as well as the various governmental programs that the individual is entitled to receive.
  • Transition is needed from State being solely responsible for implementation of progressive legislation to allowing State Instrumentalities [Agents of the State and the Nationwide Agents] to take on it – this is how ABLEnow operates nationwide across state lines. This can be possibly achieved by executive order.

  • Addressing Special ED – De-segregation, de-monetization of ABA, and the self-direction are necessary to reverse the “Cultivation of Disability” engineered under the flawed regulations of IDEA. The demeaning approach of “the least restrictive setting appropriate to [their] individual needs and abilities” must go.

    This approach denigrates the individual and commonly affects not only them but also leads to a disorder of the entire family. The Early intervention in its current form effectively initiates the incubation of disability by prohibiting the development of self-sustainability which is what defines an independent individual. As exploration and self expression are depressed by Special Ed and the practice of their choice there subsequently follows the Cultivation of Disability.

    We must put pressure on legislators to shred this IDEA, demonetize ABA and similar approaches that employ a philosophy of ‘My way or the Highway’ that may replace it; there are better ways and we know them. It is essential that the cultivation of self-sustainability [rather than disability] begins at a young age – so that freedom in the adulthood can be achieved naturally and uniformly. Promoting a paradigm of “Educational Grounds“.

  • CARES Act [War on Autism act] must be redirected. Instead of seeking cure and prevention these funds should be used to research ways of transitioning people in institutions to their gradual integration into society. We need to develop strategy how effect a change of policy and to turn this boat to right destination.

  • Access to work that is universal and equitable in every way including pay. The sheltered workshops and subminimum wage can’t continue for another 10 years.


Specific Legal Initiatives [of Project 2020]The Autistic [IDD] Defense Fund and The Generosity Trust.

The purpose of both The Autistic [IDD] Defense Fund and The Generosity Trust is to serve as vehicles to Freedom and Independence of our people.

The Autistic [IDD] Defense Fund‘s primary intention is to fight Guardianship cases, but it is also designed for other legal purposes in line with Project 2020 agenda. It is a pooled trust of a hybrid type where donations and deposits can be made to general causes as well as on behalf of a particular individual who is under guardianship or in danger of it; so each such individual would have a personal sub-account and what’s in person’s sub-account is intended to be used on behalf of this person as the need arises.

The Autistic Defense Fund doesn’t bring a lawsuit on behalf of the individual, but when there is request by a challenging party, the Trust would fund their effort from the IDD person’s account and may borrow from other sub-accounts that are deemed unused and from the general purpose accounts as needed.

The Autistic Defense Fund may also be used to address other legal challenges such as ‘family exclusions, rights of a IDD children, and other; it is envisioned to begin as a Rhizome project but is expected to evolve into individual non-profit organization or alternatively into a separate DL program. To this effect we’ll be also seeking help, participation, and affiliation with The Disability Rights Education and Defense Fund (DREDF). [See details in Project 2020 subprojects].

The Generosity Trust is a Pooled trust where a person is named as an account trustee [or rather co-trusty] along with the Trust Holding organization that acts as Fiscal Custodian; [these are commonly banks and other financial organizations]. The list of beneficiaries is initially provided by a Grantor(s), and doesn’t get deleted, but account trustee may also add new beneficiaries [subject to rules] on a yearly bases. These new beneficiaries could be charity organizations but also any individuals with the exception of the immediate family and trust’s management.

It is important to note that this trust is recommended not only for special needs children and/or a vulnerable and none self-sustaining person [entrusting them with trustee function] but it would benefit any child and adult person.

It is also important to note that even if the account trustee is under Guardianship, the provisions of the trust make sure that it is still them personally [a person under guardianship] who make all the decisions and distributions; a guardian is not involved at all unless the guardian is a part of the person’s ‘Support Circle’. In the case when person in under Guardianship an official “Support Circle’ would be created and registered by the Trust; this circle is chosen by the individual [account trustee], and will assist the individual in their trustee function as needed.

It is a common knowledge that generosity goes far. It is also hard to keep friends when you are penniless. This Trust allows the vulnerable person to be generous by giving gifts to charity of their choosing as well as giving to people they want to honor for good deeds and friendship. We should not disallow Disabled person to be generous!

Note: This trust is intended as a ‘Quality of Life’ necessity – but it also puts on display the laws and regulations that prohibits a disabled person to exercise a virtue of Generosity. This trust will call out those who from their privileged position of power chose to deny this human right to Disabled! [See details of The Generosity Trust in Project 2020 subprojects].

Both The Autistic [IDD] Defense Fund and The Generosity Trust can function independently from each other but it’s efficacy may be maximized by working together with a Central Trust that seeks to establish a ‘Circle of Support‘ for IDD child and/or adult. Together these 3 legal instruments are envisioned to be an effective tool to optimize and promote the freedom and independence of IDD person .

The Central Trust is a Grantor trust established for a group of beneficiaries [which in this case would include a “vulnerable child”]. It may include real estate property to share and use and the liquidity that may be invested. The trust distributes dividend to beneficiaries as they come of age. The distribution of the dividend occurs as long as all the beneficiaries are self sustaining [no reliance on government assistance that imposes any restrictions in regard to dividend distribution]. However if any of the beneficiaries [of adult age] fall under guardianship or become involuntarily institutionalized then the dividends to all and each of the beneficiaries are cancelled until the individual’s freedom is fully restored. The sum of the cancelled dividend for the year would be given instead to the charity specified by the Grantor [and specifically to The Autistic Defense Fund which Rhizome plans to create and manage initially].

The Central Trust is also designed to augment the way the dividend is distributed to a beneficiary in the event that a particular beneficiary is not self-sustaining [as per definition above]. Grantor [and subsequently the Trustee per Grantor’s guideline] would specify how the dividend is distributed and which specific accounts [of the individual] and in which proportion would be receiving the dividend [this function will be automated by assistive expert software which we are currently defining – see sub-projects 2020] so not to affect the eligibility of the individual to Government benefits as needed.

Per Central Trust dividend distribution – a specified part [%] of the dividend from the Central Trust for the eligible [qualified by specified by Grantor age] beneficiary will be deposited to beneficiary account in The Generosity Trust when it exists [may be done for every beneficiary and should be done for ‘not self-sustaining’ beneficiary]; these funds will be distributed to The Pooled Generosity Trust into a member account where this individual is a co-trustee. [Note that The Generosity Trust however may function independently of Central Trust and can be established on behalf of any person].

We [Project 2020 team] are in a process of defining a version of Central Trust to which we would refer to as – “Circle of Support Trust” – which would serve as a boilerplate trust of this kind. The Circle of Support Trust would be naming a group of extended family members [such as grandchildren in this first incarnation] including a vulnerable child as the beneficiaries in the Grantor trust set by a family member [a grandparent(s) in this case]. The beneficiaries will form a ‘Circle of Support’ for each other and specifically for their vulnerable members. The trust may contain both fixed and liquid assets. A dividend will be distributed according to the dynamically specified general rules of the Circle of Support Trust.

Our team would look to promote these types of trusts and provide a free or inexpensive advising service to this regard.


GLOBAL PROJECTS [Projects for advancement of Humanity]: In addition we welcome people interested in global projects that we seek to initiate as a part of infrastructure rebuilding: These include the ORGANIC project, The Assistive Expert software development, and the Design of safe spaces [ [promoting 6 feet separation] that include work environments, leisure places, educational grounds, nursing environments, transit]. Let us all bring forth our vision and ideas.


Prerequisite: Regroup and refocus Rhizome Core and recruit new members who are interested in working to advance project 2020 and would contribute to Rhizome Agenda and Projects.

Next : Sub-Projects of Project 2020 [work in progress]