In our Analysis and Solutions for Self-Determination we have proposed a simple Guideline which in compressed form is reiterated below:
- Simplify – it should follow a consumer-provider model.
- A person must be an empowered person – allowed same rights and personal choices with their money as everybody else.
- The State must allocate funds directly to an individual – When a person is a child the funds shall be managed by parents.
- Self-determination for Disabled must begin in childhood – as it is for all the children.
To enable this guideline and help to make it effective we made two additional important recommendations:
- A recommendation to provide a year of child-caring sabbatical with a guaranteed return to work [partly subsidized by private insurance] for a parent nurturing a disabled child in early stages.
- A recommendation in regard to person to person supports – specifically provided by disabled, retired, youth, and young people in transition, including family and friends. The exchange of money for services [via account-to-account smart mobile apps] should be exempt from taxation and shall not affect any other benefits by either party.
At the base of this Guideline is TRUST. The Policy of Trust [trusting in the honesty, prudency, responsibility, and well meaning of disabled individuals, their families, and their extended circle of supports] in our age of smart technology is both cost effective and also highly verifiable; it leads to elimination of layers of ineffective bureaucracy and expensive machinery it employs – replacing it with simple, inexpensive, incorruptible, solutions that promote honesty, transparency, and community engagement, as well as the overall welfare and health of society. The Policy of Trust leads to creation of a Climate of Trust which is essential for Building a Culture of Health.
With this Guideline let us now approach the path to Emancipation.
The Path to Emancipation is a path to Inclusion. We have people locked
under strict supervision in institutions, group homes, farmsteads, and even as captives in their own homes. Inclusion in the Community at large, and for children inclusion in the diverse community of children of local communities must become a priority. This however must not translate to a life of a captive living behind the locked doors in a communal setting. Inclusion implies Open Doors!
The Path to Emancipation is also a Path to Freedom. Control and supervision must be replaced by stewardship and Support. Empowerment of people with developmental disabilities must occur at all levels of societal institutions. Freedom necessitates Empowerment!
The Path to Emancipation must be supported by Law. We still have discriminatory laws and loopholes that disqualify us. Disability needs the Equal protection of the Law!
The Path to Emancipation originates in Childhood. It is during childhood that self-determination and self-independence are developed. We must not allow interventions that espouse behavioral normalization and are mired in segregation and relentless control – these interventions are ruinous to the spirit and well being of the child. Following the child and facilitated guidance is what we need to foster self-determination. Childhood must once again become a Sacred Right!
What are the practical steps?
Laws and Regulations need to be amended! The road to this is in our unity. We need to come together as Autistic community. We need to gain support of Disability Community at large, we need support of parents. We need public support. This is the time of change and challenge. Emancipation of our people requires unwavering Commitment.
It will be a gradual process. Let us imagine how it may unfold if some of the important changes are indeed adapted, beginning with the Policy of Trust.
Policy of Trust – Transition to adulthood – Steps and arrangements.
1. Assessment of needs – this step is similar to what is done currently. It shall be done jointly by the accredited State Disability Service (SSA), by the individual who may come with the personal support of their choice [when requested], and by their parents or parent surrogates. The parties must identify and agree on needs and services that individual requires for effective self-determination [includes freedom, authority, support, and responsibility].
2. The Budget – Based on the ‘agreed on needs’ the budget is determined by pricing the average cost of each per need service by the independent providers in the locality of residence. The sum of these estimated costs would form a monthly budget that will be provided by the State and which will be deposited to individual’s account on monthly bases.
3. Account Access – The account shall be accessed by a smart debit card [powered by highly configurable software to assist in prudent categorized spending, with checks and balances, etc.] The account would allow the individual to make payments both to vendors as well as to support individuals [including qualified tax exempt individuals], both contractual as well as ad-hoc. Furthermore the account would allow person to save when and where they can and may, and use these savings as they may choose. These Assistive Technology apps [simple to develop or adapt from existing apps] would both provide a prudent advise as well as the analysis and reporting for the purpose of oversight.
4. Special Provisions – There should be provision for special purchases and unexpected expenditures; some of these services [like doctor visits] may use reimbursement approach by the service or the individual.
5. Housing – housing allowance shall be estimated on the basis of the average cost of a single apartment rent in the locality of current residence, even when person continues to live with parents. It shall be provided regardless of individual’s personal housing situation at the time of assessment.
6. Supplemental funds – The current use of Special needs private trusts shall continue, and may be used to supplement the SSA budget, as per stipulations. However it should be recognized that low income families may not be able to afford such trusts, in which case certain [tbd] monetary infusion by family may need to be exempted from taxation.
7. Exemptions – Furthermore person to person supports – and specifically provided by disabled, retired, youth, and young people in transition, including family and friends should be exempt from taxation [subject to transactional and cumulative checks] and shall not affect any other benefits by either party. These supports shall be compensated via same smart card tech [using simple account-to-account mobile based apps]. In this way all the transaction are verified by Assistive Technology providing both the oversight and recording.
8. Use of Smart Assistive Technology is instrumental for the success of this undertaking. The technology is currently at a point where what we need is highly feasible – some of technology is already available and can be easily adapted and integrated into cost effective, verifiable, and incorruptible tools leveraging the Transformation and Emancipation of Autistic people.
Policy of Trust – Transition to Self-Determination in Group homes and Institutions – steps and arrangements
We have people under guardianship and other forms of legal and illegal restriction. What can we do to transition them to Freedom? How do we transition from captivity and restriction to self-reliance, independence, and when needed a supported independence?
We have stated that Path to Emancipation necessitates Inclusion, and Inclusion implies Open Doors. The Policy of Trust is the Open Doors Policy. But people in institutions and group homes may not be ready. What would it take to make them ready and how can we influence and effect this happening?
The answer is in the 5th Principle of Self-Direction – “Confirmation – the recognition that individuals with disabilities themselves must be a major part of the redesign of the human service system of long term care”. We shall empower people in the places of their habitation. This is what we believe can be achieved by Autistic Governance.
Autistic Governance addresses basics of Inmate Empowerment in institutional housing of all kinds. It is a necessary component of self-determination in institutional settings, and a path for the individual to transition to Community Living. Here we outline the Guideline for achieving self-determination in institutional settings:
- Communication [is a first step of empowerment] – all inmates must be allowed to communicate with an outside world at any time without restriction. The unrestricted private use of personal communication devices [smart phones and other] by an individual shall be implemented without exceptions in every institution, group home, as well as in private residences. Training including the use of social platforms shall be done non-intrusively following a facilitated self-directed approach utilizing the teaching capacity of Assistive Technology[grant by State] as a tool for learning; validation of unrestricted personal and private use and non-interference shall be carried out by the smart technology [grant by State].
- Visitation – all inmates shall have a right to receive visitors during daily hours; Right to visitation is a necessary element of empowerment; it must be promoted and cultivated. All visitors shall be pre-approved by the individual – they shall include people who are family members and established friends, as well as newly established connections [see 3]. Inmates may schedule visits according to their preferences but visitation process shall also allow shorter visits from unchosen parties in a fair manner [suggesting a queue maintained and scheduled by AT apps]. This is necessary for maintaining extended supports as well as rejuvenating old relationships. Visitation should also allow for ad-hoc visits. The number of visitors and visiting hours per day may be subject to house rules to avoid overcrowding and not to be interfering with specific scheduled events.
- New relationships – Creation of new relationships including with possible future supports is essential element in person’s path to self-determination. This process shall be encouraged and there should be scheduled [by the individual] time each week when people who aspire to build a personal relationship as friends, volunteers, or paid supports would be allowed to come in and “tryout”. The process should be non-discriminatory and fair, allowing the individual and an applicant to have time in comfortable settings both indoors and outdoors. The applicants would be subject to ID and criminal verification.
- Going Out [stage 1 – with a friend] – Going out is a gradual process that shall begin with the inmate being Taken Out by an outside visiting person – inmates may be “taken out” by pre-approved individuals; the approval shall be anchored around the approval of the inmate; the approval process should be non-prohibitive for a verified visitor but may require an orientation instruction by the staff. The inmate and a person taking the inmate out must have a trusting relationship as a precondition. Going Out with an outside party may be exploration on foot – walking to local places of interest [parks, libraries, stores, community centers] as well as travel by car, bus, etc. The strategy should be in establishing comfort zones and familiar routes. It would require time and patience before person may become ready to go out on their own.
- Going Out [stage 2 – on your own]. – this would be a process initiated on inmate’s request [readily available to each inmate and recorded automatically] – intitially it may be to a specified already established comfort destination. The approval would involve a joint decission by the Resident Governing Body [see RGB below] and the Administration. The use of Assistive Technology – tracking and monitoring of the route, as well as access to backup for assistance – would be required initially. Refusals of person’s requests would be subject to watchdog oversight, and arbitration.
- Drug policy – drugging of inmates for the purposes of control must be eradicated. This would require independent review, inspections by the watchdog organizations, RGBs involvement, and a policy of misconduct oversight and enforcement.
- Resident Governing Body [RGB] – Watchdog disability organizations [such as: Alliance of Citizen Directed Supports, ASAN, TASH, Divergent Labs, …] and National Councils of Disability shall be empowered and funded to take on joint responsibility to assist in creation and support of Resident Governing Bodies [RGBs] in institutions and housing of all kinds; such governing bodies shall be elected democratically by the inmates and from the inmate ranks; RGBs would be empowered in joint decisions regarding certain areas of administration, including the selection of staff, household rules, visitations, going out, and other.
- Grievances – A confidential [AT assisted] access allowing inmates to submit personal grievances and complaints to statewide Grievance Processing Authority should be established and shall afford them due and diligent process. Submission of the grievances shall be made available from a personal communication device and shall be confidential as well as all subsequent communications; all the aspects of this process should be safeguarded by well designed AT software.
The goal of the recommended above process is to prepare people to transition to independent [with self-directed supports] life in a community; and to transform these institutions to hospitable integrated communal living for those who shall remain within.
Policy of Trust – Self-Determination for Children – Raising Autistic Child
The path to Emancipation originates in Childhood. It is during childhood that self-determination and self-reliance are developed. This is true for all the children without exception! Inclusion in the Community at large, and for children inclusion in the diverse community of children of local communities must become a priority. Freedom, Authority, and Responsibility are not acquired in isolated environments. Following the child and facilitated guidance is what we need to foster self-determination and independence.
This is the most critical and most difficult undertaking that we as society face. The war on autism has tragically morphed into a war on autistic children as it is inseparable from them. They are the victims and the powerless prisoners of this war. We must stop funding this war! The Combating Autism Act must truly become a CARES Act not in name only but by the virtue of its purpose. The immense funds that currently fuel the war on autism should be used instead to help subsidize the nurture of the child, including the policy of parental leave with a guaranteed return to work for a parent of the disabled child in the early stages, and other care related needs of the preschool years.
The Policy of Trust has a wide scope and many dimensions – it must be embraced by families, schools, institutions, and the Government. It begins with Trust in the Child. Autism is a genetic adaptation resulting in child’s extended development – it proceeds on a different timeline where typical milestones do not apply; it requires longer nourishment, but these children are far from being dysfunctional – in a fast changing world they may have an edge… We shall not allow interventions that espouse normalization and are mired in segregation and dehumanizing control – these interventions are ruinous to the spirit and the well being of the child. We shall not succumb to mistrust and evil! We must uphold Child’s Dignity and their Sacred Right to Childhood! The Policy of Trust must be grounded in our firm trust in child’s purpose and their natural ability to find their unique place in the world and in our society – this policy requires our respect of their individuality and aspirations. It also requires our trust in the innate GOODNESS of ourselves as PEOPLE!
We made a recommendation to enact legislation that would provide a year of child-caring sabbatical for a parent nurturing a disabled child in early stages. This would help in the development of a healthy and happy child which is essential for child’s development. We have made a recommendation for approved funds to be distributed to individual’s accounts – family should be recognized as a true foundation fulfilling the needs of the child in early years. This should be supported by our society, by the law, and the business. But this also puts great responsibility on the family. The respect of the child must be embraced by the family and child rights must be always upheld. You may be the best parent, but you must learn to let go and have your child lead the way.
Family should be cognizant in helping the child to establish a trusted circle of people able and willing to provide support [including specifically in decision making]. Trusted friends help us all make right decisions and help us in need. A circle of friends and family is essential, and it will foster child’s spiritual and psychological growth throughout their life just as parents do in their early years. The process of creating this circle should begin early and is a structural part in developing principles of self-determination – communication, friendship, trust, authority, responsibility, and ultimately freedom – all of it developed by the child through the exercise of encouraged self-direction. The openness of society would be a guarantor of this. It is a gradual process with the goal of self-reliance at adulthood and maximizing the self-sufficiency. Not surprisingly it is the same process in principle that we should follow in raising any child. Our Society has means and capacity to engineer this environment.
Self-direction is spreading its wings for all the children. It is a natural way that brings out individual gifts. It relies on the indirect facilitated teaching and natural learning; it is done in the nature, and in the community that we and all the children need to reclaim and renew. Schools are becoming prisons not only for autistics but autistic children are truly the proverbial ‘canaries in the mine’ – what’s not good for them is not good for others! We need to reclaim the universality of our educational solutions. We should remember that it takes a village to raise a child; a friendly village where doors are open and children own the street.
We should concentrate on transforming education paradigm from within, beginning with the segregated schools for” developmentally disabled” children. Centers for Developmental Disability should be the initial grounds where change can be made; their methodology of intervention, and specifically ABA and other intrusive forms are crying out for change. We can reengineer these places both by opening their doors to other children and by promoting the alternative approaches to teaching and learning – the universal approaches that humanity needs to recover and renew.
No matter where you and your child are on their road to adulthood it is not too late to cross over to the path of Self-determination. It is the only right path for your child – the path that leads to their independence and freedom. You must trust them to lead there and you should do all you can to help.
#SupportSDDD • #SupportUniversality [821] • #SupportTrust [101] • Support #Idea821x101
