Mission: Return to the Community of People as Free People
In Autistic Solutions presented by Project 2019 we have recommended that Policy of TRUST must be at the base of an effective mission towards deinstitutionalization and emancipation of our [IDD] people, and we have proposed a simple guideline for achieving this. We have also initiated a grassroot campaign to promote it and to grow this campaign into a movement. This was a monumental task and though we know that the time was right for bringing our people together – our effort fell short; we have failed.
The reason we have failed is because we didn’t believe in ourselves – the Autistic and Disability organizations at the forefront of our community were no show; but Rhizome Core itself has also failed to rise to the challenge. And so we need to find faith in ourselves, and to rebuild, and explore new ways.
The path we suggest for Project 2020 is to explore alternative ways to achieve our mission by advancing the latest breakthroughs in the legislative and regulatory fields by ways of automation and assistive technology.
By way of automation and assistive technology we can easily transform the antiquated structure of self-direction to perform with the efficiency and speed that would parallel the universal consumer – supplier model employed by our society [while under the hood complying with all the constraints and regulatory requirements of the legal self-determination structure].
Our guideline is to look at ways to bring forth this automation while also pressing for uncompromised [true] breakthroughs in the legislative field [see below].
In our society access to money serves as a decisive measure of independence. This is where the disparity originates and is perpetuated. The efficacious difference between the ‘able’ privileged [NT*] and the constrained ‘disabled’ [IDD] person is ‘the money in a pocket’; NT has the money in a pocket, while IDD’s money are in a pocket of Fiscal Intermediary or in the hands of Special Needs Trustee [SNT]. These moneys are never accessible to IDD individual directly and this commonly leads to the exploitation of the person who effectively becomes a slave of the ‘Services’, i.e. those who manage it, administer it, and feed of it.
However, the latest breakthroughs in progressive federal legislation [specifically 1915j and 1915k] and ABLE legislation, as well as the recent giveaways [by special interests] in some States [CDPAP NY] in regard to personal services provided by the family members open an avenue that our guideline seeks to explore both legally and businesswise.
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.
Family is the core of our society, it must be strengthened; without family we become an institution. We need to join our efforts 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.
We must make sure that new regulations reverse the restrictions 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.
This we can address by going to Court and challenging these restrictions; for they are not justified as far as one can see. What are the reasons for refusing one support person over the other person on the familial grounds alone? What could be that reason but to deny a disabled person their freedom of choice and accommodation and to guide them to an institution!
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.
As regards ABLE legislation and especially the ABLEnow implementation of the ABLE Act as a Nationwide Service administered by a partnership of commercial and non-profit entities – it is probably the greatest breakthrough for people diagnosed as IDD we have seen so far. The unprecedented ‘ABLE NOW’ solution has circumvented the incompetence and machinations of States [not much happened there] and for a minimal fee [that is universally accepted] has provided ABLEnow members with direct access [including a Debit Card] to the money they would earn and to the funds granted and donated to them, while making it tax exempt and without affecting any governmental benefits and qualifications imposed on people with Disabilities – thus giving the individual a wide latitude in accessing Universal services available and used by all.
Project 2020 seeks to further the universal approach engineered by ABLEnow to provide a solution that would allow an individual a similar [direct and instant] access to the funds of their SNTs [Supplemental Needs Trusts], as well as the various governmental programs that the individual may be entitled to. This can be done by expertly designed assistive software and technology that would integrate and control [via rules based smart software] access to all the funds, and also provide the validation of the proper usage, the flexible handling of allocations and disbursements, as well as all the required governmental reporting.
It must be noted however that neither ABLE nor SNTs are achievable by the poor or even middle income families, and this is why it is important to develop ABLEnow like solution that provides direct and instant access not only to ABLE and SNT funds but also to the funds from governmental programs that individual is entitled to. The implementation of an ABLEnow-like model with a controlled access to the various benefits would allow the disabled individual to access universal services that are available for all. This would be a great achievement for Disabled people who are currently limited in their ability to exercise their freedom of participation in accessing the services that community provides and enjoys, and this would also provide tremendous savings for the States.
Finally and most urgently we must come out for those of us [IDD and others] who are in institutions and captives in their own homes – people under Guardianship and other forms of overreaching control. We should understand that it is ‘the system’ that forces parents to place their children under Guardianship; it is the ‘forced’ parental consent that leads our people into institutions.
The path to Freedom necessitates the restoration of the rights [removal of exemptions] of the family. This will remove much of the pressure [both financial and psychological] on parents, but we must not be silent about the fact that it is the parent who is ultimately responsible, and while we fight for the removal of the familial exemptions we must also fight for the rights of the child.
This is not a contradiction, this 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.
We must fight both for the rights of parents and the rights of a child – both need to be restored. It is the absence of these rights that leads to the tragedy of Guardianship and Involuntary Institutionalization.
This law and it’s practice have no place in our Society – it is a form of Slavery – and we must call on all the people to ABOLISH it.
OUR GOAL MUST BE CRYSTAL CLEAR –
Return Our Freedom, Return Our Rights!
Next – Overview – where we are and where we are going