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.
NOTES on Advances in self-direction:
One positive developments is seen in the area of Self-Direction, HCBS and Housing. It’s been driven by the extreme shortages of qualified aids and affordable housing covered by the Medicaid waivers and it is exemplified by the Consumer Directed Personal Assistance Program (CDPAP) – a New York State Medicaid program that allows consumers to recruit, hire, and direct their own home care workers.
What makes this program very special is that it removes all the complicated rigmarole of the original RWJF Self-Direction model that was [and still is] in place since 1996 and had not got much traction. In addition to that and even more importantly it allows the family members previously prohibited to provide services to their own and be paid. Here are the highlights: Children get paid to provide care [as personal assistants] for their qualified parents, and parents get paid to provide care for their disabled adult children. Personal assistants are not required to have special certification or licensing. Personal assistants can administer skilled services. And just as importantly for Self-Direction: whether the consumer is self-directing or not is irrelevant
The hiring process is exceptionally simple. There are three parties involved: the person who qualifies for care, the personal assistant chosen by the person, and the Fiscal Intermediary [commonly the same providers who run the adult institutions] who does the paperwork, collects the money from Medicaid, pays the personal assistant about a quarter of what they collect, and keeps the rest of the money. The Providers are loving it [no surprise] and there is a fierce competition for signing family as care assistants. It solves the housing issue, it solves the aids shortages, and it is a step closer to what we were advocating and tried to accomplish in Project 2019, by what we proposed as a Model of TRUST [the consumer collects the money, pays Fiscal Rep an appropriate fee for doing the paperwork and handling the payroll, and pays a decent wage to the personal aid].
Notes on ABLE legislation and ABLEnow solution [instrumentality]
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.
To summarize – Everybody communicates! Solutions: Supportive decision making; circles of support; Assistive technology; universal services, automation. Fiscal intermediaries; HOME BASED CARE!
Challenging involuntary institutionalization as violation of civil rights [a form of slavery]. Includes elderly and mental illness. Challenging community settings as institutionalization (freedom to come and go).
Settings of any size • Settings of any type such as group homes, nursing homes, psychiatric facilities, IDD facilities, a host family or family foster care, a home owned or rented by one or more persons with IDD, the home of a family member, or settings such as assisted living settings, board and care facilities, intentional communities, communes, or farm collectives shared by groups of people with disabilities.
What differentiates these settings is not where they are, and not their size – but how they operate. The main determinant of the vile institution is its denial of the “freedom to come and go” – this is a main determinant.
promoting Archipelago Autistic (Ocate Cliffs, GAIA, and other autistic retreats and intentional communities) regardless where they are [in the country or in the community] and regardless of the condensation of people and their diversity. 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.
LTSS summaries:
- 14 million adults of all ages needed LTSS in 2018.
- More than two in five adults with LTSS needs are younger than age 65.
- The vast majority, 90 percent, of the LTSS population lives in community settings, while just 10 percent reside in nursing homes.
- Providing the bulk of LTSS are unpaid family caregivers (defined as including friends and neighbors in addition to relatives).
- In 2017, LTSS spending totaled $235 billion. The largest payers of LTSS are Medicaid—the joint federal and state health insurance program for people of all ages with low incomes and limited savings—and individuals paying for LTSS out of pocket.
“The term institutionalization – may be used to refer to committing a particular individual or group to an institution, such as a mental or welfare institution. In the United States and most other developed societies, severe restrictions have been placed on the circumstances under which a person may be committed or treated against their will as such actions have been ruled by the United States Supreme Court and other national legislative bodies as a violation of civil rights and/or human rights (see e.g. O’Connor v. Donaldson). Thus a person is rarely committed against their will and it is illegal for a person to be committed for an indefinite period of time. “
About 1.5 million people live in nursing homes in the U.S., according to the Centers for Disease Control and Prevention [google search]
In regard to Transition to Community [so called re-balancing] – where incentives are given to States to transition people from the congregate settings to the communal-settings – our position is as follows:
The Transition should be from both types of these housing institutions [from 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.
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.