As founders of My Community Care Team, Maria and I are philosophically
opposed to all CMS waivers because individuals have a human right to live at
home and in the community. When an individual needs medical and personal
care supports, whether due to a disability or simply being frail, that
individual should always have the opportunity for home supports.
Home and community are natural and empowering environments. Why is it that a
waiver is required to support an individual in the environment that is most
natural and most empowering?
If we are to have a waiver, it should be an Institutional Waiver. That is,
needed supports should be provided in the home and community automatically –
the institutional option should be considered if and only if it is
impossible to support an individual in the home environment.
Institutions by their very nature deny individuals human and civil rights
and liberty. Article V of the U.S. Constitution clearly states that no
person can be “deprived of life, liberty, or property, without due process
of law.”
Every person who is in a developmental center, nursing home, or residential
school, et cetera, however, is denied liberty daily – though they have
committed no crime and have had no due process hearing.
Maria and I are not lawyers, but we are humans and know that the
institutionalization of an individual without due process is not only wrong
and inhumane, but also results in a poor quality of life and dependency.
We also know that institutionalization is costly and inefficient and never
results in an improved quality of life or increased freedom and options for
individuals placed in such a setting even with the best of intentions.
We know that if an individual could utilize just half of the dollars
allocated to his institutionalization to purchase services, the quality of
life of the individual and the opportunities open to him would increase
exponentially.
We know also that in virtually all cases, the best interest of the
individual has is not seriously considered before institutionalization.
Certainly, the decision to be placed in an institution is seldom if ever
made by the person institutionalized.
Our philosophy is simple: “Home and community are natural and empowering
environments. What is needed are not waivers to remain in the community, but
the will of society to provide adequate, flexible, and consumer-directed
supports from birth to death.”
As we enter the twenty-first century, how is it are our most vulnerable
citizens forced to go to the state and federal government to request a
waiver in order to live at home with family and friends? Are individuals
placed in institutions because society believes institutions will provide
opportunities for increased freedoms, a better quality of life, and
assistance in growing increasingly independent? If we want to maximize the
opportunities to individuals to become contributing members of society,
where do we believe the best opportunities lie – in the home and the
community, or in an institutional setting?
Discussion of the fragmented CMS waiver system and how it perpetuates the
insidious and discriminatory CMS institutional bias could fill volumes. We
do not wish to bore you any further, however, and will now address the absurdities of an actual Medicaid waiver. following is the NJ TBI waiver eligibility criteria. There are an estimated 350 plus Medicaid Waivers in the US each with its own bizzare criteria and exclusions.
The goal of the TBI Waiver is to offer critical services to
Medicaid-eligible people with brain injury in a community-based setting.
The Waiver serves people ages 18 – 64 who have sustained a brain injury
after the age of 16.
The goal of offering critical services is an excellent one, but one
undermined to some extent by its narrow scope.
The first problem is the exclusion of non-Medicaid eligible people from
needed critical services. While we do not like to restrict any program that
provides critical services, we recognize that the government has limits to
its supports and would support the expansion of the TBI waiver even
Medicaid-eligibility criterion intact.
The second problem is in limiting the eligibility to persons with brain
injury. We have now narrowed our scope further, but recognize that there may
be other waivers that address the needs of those with critical needs who do
not have brain injury but wish to remain in the community.
The third problem, again, is one of limiting the eligibility, but is more
serious. The waiver serves only those 18-64. Brain injury, however, can
occur at any age. If this is the case, where is the logic in restricting
critical services only to those older than 18 and younger that 64? For six
years, from the time of her brain injury it at age 12, Maria and I searched
for a program that would meet Maria's critical and permit our family to
reclaim a semblance of normal life, but the search was in vain as no similar
program exists for persons under the age of 18.
A fourth and related problem is the yet further restriction of eligibility
only to those who sustained their brain injury after the age of 16. Again,
the excellent goal of offering critical services has been further narrowed,
and this particular criterion is nothing short of bizarre. Why, we wonder,
age 16? No one can choose or foresee the age at which they will be involved
in a traumatic accident. Though my daughter Maria has now finally passed the previously
discussed age requirement, she is arbitrarily denied access to this waiver
because she received her injury at age 12.
Indeed, these last two criteria seem particularly arbitrary. We recognize
that the intention of limiting the scope is likely to better serve those who
meet the criteria even if it means that some must be excluded. By this same
rationale, however, would you be willing to support a TBI waiver program
that rather than excluding children, the elderly, and those who had the
misfortune of being injured at 15-and-eleven-months, instead excluded
Italians, Jews, schoolteachers, or any similarly arbitrarily selected group?
Brain injury does not discriminate on age or any other basis; it is a shame
that the CMS waiver program does. Who determines who is excluded, and what
is the rationale for that decision? If the waiver is already limited to
those who are Medicaid eligible, why further restrict the eligibility
requirements to those 18-64 with an onset of injury after age 16?
Why should Maria and any individual with a disability be at risk of being
deprived of liberty
to receive critically needed services and supports.
In conclusion, Fernald must close and the current residents offered community options in accordance with self-determination principles. We fbelieve the CMS Community Waivers are an
oxymoron, and Un- Constitutional. We recommend that funds be allocated to expand the NJ TBI waiver
program if and only if theMedicaid eligibility criteria be changed to read: The goal
of Medicaid is to offer critical services to Medicaid-eligible people ages 0-999 in a community-based setting of individual and fa
mily choice.
Thank You.
Maria and Frank Tetto—Co-founders My Community Care Team
There is not always a “home” for the person who has the kind of needs we all label as illnesses or disabilities.
As a guardian ad litem, at times, for teenagers with no functional home, and great needs be they mental health, or physical/cognitive limitations, to not get that child into a residential home & school can be to place their very lives at risk.
You write as though there ARE loving homes for everyone in need, and if only society provided enough “supports” that is all that is needed.
Life is far more complex than that. I will believe you are well intended, but due to your own experiences, too rigid to acknowledge that the reality is that not all those with needs have homes at all, nor can all human needs be met by providing “in home” services, in part because there are not always “homes” – and because some needs require so much attention, that no “home” could meet those needs.
I personally choose a nursing home for what seemed to me to be lengthy post surgical care, rather than “home” with supports because I could honestly face what my home could – and even with all the supports to which I was theoretically “entitled” – could not sustain.
Let us not over simplify, nor degenerate into “us versus them” – but rather acknowledge that there is a place both for the well run professionalized care facility AND for “home care” when there is a caring and supportive enough home.
I am aware not all persons have a home or a circle of support to be able to live independently. My position is simply that the CMS institutional bias should be eliminated.
My daughter Maria, a small group of persons from our church and community and I created My Community Care Team to change public policy to support the aspirations of all persons to live in the family,the home and community of individual choice. It is important to note “family'” does not have to be the tradidional biological and nuclear family many think of when defining family. The family our My Community Care Team refers to in addition to the nuclear and extended family also allows for individuals to freely choose to join together and refer to themselves as family.
We do not believe any of this is easy. We know the challenges of life are many and often difficult to conquer. We simply believe the aspiration, the opportunity, and the possibilities of being able to direct one's own life must be made available to all.
My daughter wrote the following to me, “Dad even though I can't walk, I can run. I can run my own life.” My daughter is 22 and lives in her own home. She requires 24/7 care and supervision. Mom and I provide much of the care. We can't guarantee my daughter will always have a home of her own. We also can't guarantee Maria our daughter will have the necessary supports and people in her life who will respect her right to “run her own life.”
We are trying very hard to change public policy as well as create the infrastructure to make my daughter's dream of controlling her own destiny a reality, not just for my daughter but for all persons. Our advocacy is based on removing the impediments to community options, individual choice, and freedom.
We do not believe institutional placements are necessary. We believe if given a choice and an infrastructure of community options existed few if any individuals or families would choose an out of home placement, or let others dictate where and with whom they live.
Yes, I understand much of the infrastructure I speak of does not exist. My hope is our society will change to provide the individual and adequate funding to create opportunities for all to live empowered and self-determined lives.
If we go back more than a century, the instutions I and others wish to be relegated to the dust bin of history did not exist. Just like the institutions were established and became entrenched, and just like the group home concept has taken hold, it is our hope to create a paradigmn shift which provides for direct funding to individuals and families, adequate resources, true choice options, and opportunities for all to choose to be free. As my daughter is fond of saying, “Freedom is the best choice of all.”