Update on Health Care/Medicaid votes in the U.S. Senate

From the national ARC news letter, Capitol Hill Insider for the week of July 24th, 2017:

Health Care/Medicaid - Senate Vote on Health Care Repeal Planned for This Week

The Senate continues to try and move forward on a plan to repeal the Affordable Care Act (ACA). On July 17, plans to repeal the ACA and cap Medicaid were put on hold when four Republican Senators announced their intent to vote "no" on a motion to begin debate. The next morning, Senate Majority Leader Mitch McConnell (R-KY) announced that there would be a vote on Obamacare Repeal Reconciliation Act (ORRA), which does not include Medicaid per capita caps, but does repeal Medicaid expansion, the increased federal match for the Community First Choice option, the individual and employer mandates, the premium tax credits, and a number of other provisions. The bill would not take effect for two years, giving Congress time to develop a replacement. However, it is unclear whether insurers will continue to participate in the market when the long-term framework is unknown. Within hours of this announcement, three Republican Senators announced their opposition to voting to repeal and delay replacement with a new plan.

Senate Majority Leader McConnell then announced that there will be a vote on a motion to begin debate early this week. It is unclear whether the vote will be on the ORRA or a revised Better Care Reconciliation Act (BCRA). The Senate is also considering revising BCRA to includes $200 billion in non-Medicaid funds for expansion states in an effort to win support from Senators from the Medicaid expansion states. The Congressional Budget Office has evaluated the ORRA and BCRA and found that they will increase the number of uninsured Americans by 32 million and 22 million, respectively.

To further complicate the situation, the Senate Parliamentarian, who must review provisions to make sure they comply with the Senate rules, has found that several provisions could be challenged and would require 60 votes to keep them in the bill. The provisions include a prohibition of Planned Parenthood funding, ending the essential health benefits requirement in Medicaid, continuing funding for cost sharing subsidies, allowing states to change the requirement that plans spend at least 80% of premium income on health care, and the six- month waiting period prior to enrollment without continuous coverage. The Parliamentarian continues to review the bill and may issue additional findings. It is unclear if the Senate has the votes to pass any legislation at this point, but the leadership is expected to keep working to try and find agreement on repealing the ACA.

Diluting Guardianship Rights

In the VOR archives is a 2009 letter from Sam Golden, the Chair of VOR's Government Affairs Committee, to the American Bar Association about efforts to dilute the rights of legal guardians of people with profound developmental disabilities. 

Then, as now, government agencies and federally-funded advocates were attempting to circumvent the authority of court-appointed guardians to make decisions for their wards. In most of the examples cited in the letter, guardians were ignored or their authority challenged when the guardians decisions interfered with the policy agenda of the agency or advocacy organization, usually to close congregate facilities. For their own convenience, agencies and advocates decided that profoundly disabled individuals, who had already been determined to lack the capacity to make decisions or give informed consent, did in fact did have that capability. In many instances, they discussed placement options and other issues without the guardian being present and claimed to have divined the preferences of the profoundly disabled person.

Sam Golden passed away in 2016. Sam was a truly remarkable person and a good friend to many in VOR. You can read more about him at the VOR Website. 

For more on Diluting Guardianship Rights, see "Model law for guardianship restricts guardian rights to act on behalf of incapacitated individuals" Part 1 and Part 2.

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Diluting Guardianship Rights

TO: American Bar Association Commission on Law and Aging

RE: RECENT EFFORTS TO DILUTE THE RIGHTS OF LEGAL GUARDIANS OF PERSONS WITH PROFOUND DEVELOPMENTAL DISABILITIES. 

DATE: January 14, 2009

I represent VOR, a national advocacy organization representing people with developmental disabilities, and their families.

Nearly all of our members have family members with severe and profound mental retardation and related developmental disabilities. Our loved ones need substantial support in every aspect of life including walking, communicating, bathing, eating and toileting. They function at an infant or toddler’s level although fully grown; they also endure multiple disabilities, chronic medical conditions and/or behavioral challenges. Many also have seizure disorders, mental illness, visual or hearing impairments, or have a combination of these conditions.

In most cases, our loved ones and their peers have been adjudicated incompetent and a legal guardian has been appointed for them, usually a parent or close relative.

We have a serious concern which falls within the Commission’s work on legal issues relating to “capacity, guardianship and surrogate decision-making,” as well as within “disability and individual rights.”

As legal guardians for our adult family members with severe cognitive disabilities, we are facing unprecedented attacks on our legally appointed rights and responsibilities as legal guardians. Like never before, some advocacy organizations for persons with disabilities, some state officials, and even some federal entities, have infringed upon our ability to carry out our duties as guardians, or have otherwise worked to undermine our status as guardians. For example,

Illinois: In a December 2, 2008 letter to families, Lilia Teninty, Director of the Illinois Department of Human Services, writes: “I welcome the opportunity to address your question, ‘Does the Illinois DHS now ask an individual who has a legal guardian about his or her placement preference without the guardian being present?’, and my reference to the Nebraska Plan. As previously identified, we have a responsibility to recognize individual rights in exercising his or her personal choices and preferences, and with respect to this right, we believe that guardian permission is not required to discuss placement options.” (Emphasis added).

Nebraska: The referenced Nebraska plan is a July 2008 Settlement Agreement between the State of Nebraska and the U.S. Department of Justice. Instead of encouraging informed choice with regard to residential placement decisions, this federal settlement agreement instead suggests additional “education” in situations where legal guardians disagree with community placement: “Where family members and/or guardians have reservations about community placement, the State shall provide ongoing educational opportunities to such family members and/or guardians with regard to placement and programming alternatives and options.”

In New Jersey, Georgia, and Florida, and other states, advocates, some of whom are federally-funded, also visit ICFs/MR  residents to discuss placement options, without legal guardian permission. This sort of communication with our profoundly developmentally disabled family members/wards is no different, and no less offensive, than if state and federal advocates entered schools to talk to children, one-on-one, without their parents’ consent. [Intermediate Care Facilities for people with mental retardation - ICFs/MR - are now called  ICFs/IID for Individuals with Intellectual Disabilities]

Illinois: The federally-funded Illinois Council on DD published a “Blueprint for System Redesign in Illinois,” calling for the movement of people from ICF/MR settings over the objections and concerns of legal guardians, stating, “[t]heir objections should not circumvent the process.”

California: In 2002, the federally funded California Protection and Advocacy agency (PAI) filed its second lawsuit to close ICFs/MR, arguing in court against family/guardian intervention, stating, “As a matter of substantive law, parents and guardians of institutionalized persons have different and potentially conflicting interests on matters pertaining to their child’s or ward’s constitutional or statutory rights to liberty and due process.” PAI’s first lawsuit was filed despite overwhelming opposition by families and guardians. PAI’s first lawsuit closed two ICFs/MR and transferred 2,500 people to alternate settings leading to reports of abuse, neglect and death.

Wisconsin: The Wisconsin P&A filed a lawsuit on behalf of minor residents of ICFs/MR, notifying their parents (legal guardians) after the lawsuit was filed in case they “might be interested.”

Maine: A Maine P&A advocate counseled her mentally ill client, William, who was receiving inpatient psychiatric care, that his parents were a “negative force in his life” given their efforts to keep him “institutionalized” due to his severe mental illness. Her subsequent “victory” in winning his release was followed shortly by William murdering his mother.

Centers for Medicare and Medicaid Services (CMS): In 2007, CMS, an agency within the U.S. Department of Health and Human Services, published its official guidance to state governments for state Money Follows the Person programs. In this guide, CMS instructed states (not courts) to critique guardianship performance. VOR objected noting that the CMS MFP Instruction Guide,

“. . . directs states and CMS to critique and challenge the competency of each and every guardian, without regard to the existing judicial process in place, and without regard to statutory requirements relating to the role and responsibilities of guardians appointed by the individual’s state court. It further encourages states to pursue the removal of guardians, who in their standards (as directed by CMS) don’t measure up. Thus, CMS would usurp states’ guardianship authority. This is an unacceptable interference with states’ rights and would put every ward at risk of losing his or her appointed guardian.”

Developmental Disabilities Assistance and Bill of Rights Act (DD Act) Programs: The three federally created and authorized DD Act programs routinely ignore and disrespect legal guardian involvement and choice. Several examples of P&A disrespecting family/legal guardianship involvement were noted above. It is not surprising, then, that the national association for state P&As, the National Disability Rights Network, signed a letter to Congress which called families, many of whom are legal guardians, as “clueless.” In a related example, the National Association of State DD Councils proposed changes to the Act’s “primary decisionmaking” clause which would cut out completely the current legal role of family members and legal guardians of adults with developmental disabilities.

Although characterized as an attack on our rights as legal guardians, the real victims of these undermining actions are our fragile family members with severe and profound developmental disabilities, who depend on our compassion and insights to make sound decisions in their best interests. [Emphasis added] As recognized by the Supreme Court, “close relatives and guardians, both of whom likely have intimate knowledge of a mentally retarded person's abilities and experiences, have valuable insights that should be considered during the involuntary commitment process.” [Heller v. Doe, 509 U.S. 312, 329 (1993)].

Our love for our family members is what motivates our decisionmaking. When advocacy organizations, who have never even met our family members, work to undermine our legal decisionmaking authority, they are working toward an ideological end, whether or not in the best interest of our family members. Our fragile family members are mere pawns in their efforts to eliminate licensed facility care as one residential option for people with especially severe cognitive, physical and medical disabilities.

We respectfully request that the ABA Commission on Law and Aging and the ABA Commission on Mental and Physical Disability Law review our concerns and take action. We would welcome the opportunity to meet with you to further discuss this issue and explore ways that the ABA may help. Respected members of the legal community – from lawmakers, to attorneys, to judges – are in unique position to address this important issue.

Sincerely,

Sam Golden
Chair, VOR Government Affairs Committee

Model law for guardianship restricts guardian rights to act on behalf of incapacitated individuals: Part 2

Monday, July 24th, 2017

See Part 1 for VOR’s comments included in a cover letter to the Uniform Law Commission (ULC) committee on guardianship.

Below are additional comments that VOR sent to the ULC committee. VOR’s concerns are summarized in this paragraph: 

“VOR is deeply concerned about any effort to weaken the protections of guardianship. Attempts to replace guardianship with technology or Supported Decision-making affect not only those with severe intellectual disabilities but also people with I/DD who are vulnerable to manipulation and coercion by others as well as individuals who lack awareness of the consequences of their own actions which may cause harm to themselves or others.”

To better understand the comments... 

The term “ward” refers to an incapacitated person who has a guardian who has been appointed through state court guardianship procedures.

The “petitioner” is the person in a guardianship procedure who is asking to be appointed guardian for an individual who is unable to make or communicate decisions in some or all aspects of his or her life. The vast majority of guardians are family members or close friends of the incapacitated person.

The “respondent” is the individual for whom a guardianship is under consideration by the state court. Here is a link to the draft proposal from the ULC "Committee on Uniform Guardianship, Conservatorship, and Other Protective Arrangements Act". The VOR comments reference sections of this document.

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VOR Comments to Proposed Guardianship, Conservatorship, and Other Protective Arrangements Act

Supported Decision making (SDM), Guardianship, and the Least Restrictive Standard The Prefatory Note and Section 314 speak in favor of the “least restrictive means” of serving the ward with a bias toward Supported Decision-making [SDM]. [We refer you to VOR’s Position Paper on SDM.] SDM does not offer a “least restrictive” means of providing support to an individual. For individuals who are incapable of participating in the decision making process due to their intellectual disabilities, the SDM team would be engaging in the substitute decision-making that SDM allegedly prevents. How is the substitute decision-making of the SDM team “less restrictive” than the decision-making of a guardian, especially when that guardian is a family member with intimate knowledge of the ward and motivated by unconditional love?

The term “least restrictive” should be defined in the Act. The “least restrictive means” should be defined in terms of what is actually least restrictive for the individual based on that person’s needs and preferences to the extent that the preferences are actually known or reasonably ascertainable by the guardian and the court.

Residential Choice The “least restrictive means” also entails a bias against congregate residential facilities. The Americans with Disabilities Act (ADA) and the U.S. Supreme Court Olmstead decision, which interpreted the ADA, recognize the unique needs of the individual with disabilities and their right of choice in accessing public accommodations for disabilities, such as residential services. In Olmstead, the justices affirmed the “States’ need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities,” Olmstead v. LC 527 US 581, 597 and stated,

“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle and benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” Olmstead at 601-602

Furthermore, the Developmental Disabilities Assistance and Bill of Rights Act of 2000 supports individual choice among residential options and recognizes families as the primary decision-makers,

“Individuals with developmental disabilities and their families are the primary decision-makers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options, and play decision-making roles in policies and programs that affect the lives of such individuals and their families.” DD Act, 42 U.S.C. 15001(c)(3)(2000).

Section 314 (c)(4) and Section 317 (a)(7) of the draft act requires guardians to take additional steps and to provide increased reporting should they choose an “institution,” “nursing home,” or “facility” as a residential placement for a ward. The language in these sections instills a bias against such settings. As these settings serve individuals requiring higher levels of care, the language works against the most severely and profoundly disabled individuals needing guardianship. Additionally, this language infringes on the right of choice of individuals and their guardians and flies in the face of the second prong of Olmstead which confirms the individual’s right “to oppose” placement in the community. Parents and guardians are the most knowledgeable about a ward’s overall needs, and therefore, their decision-making with respect to residential choice should be respected..

Sensitivity to certain terms (e.g., “ward”) The Prefatory Note speaks about the drafts’ updated terminology. The draft does not use the terms “ward,” “incapacitated,” and “incompetent”. These terms define why guardianship is needed, and as such, serve as protections for the individuals affected. The descriptive nature of the terms alert others to the fact that the affected individuals need additional assistance, and thus, stimulates compassion in others. “Person subject to guardianship” is non-descriptive and could actually cause confusion as to the degree of disability at hand.

Excessive Reporting VOR believes that responsible and caring individuals wanting to serve as guardian for an incompetent person should be encouraged, especially when those individuals are family members and close lifelong friends of the individual. We are concerned that the Guardian Plan required in Section 316 could discourage guardianship by adding unnecessary burdens. Given that a Guardianship Report is already required, a Plan in addition seems excessive and could be intimidating for some caring and loving people who would make excellent guardians, but are not comfortable with bureaucratic and legalistic-sounding paperwork. The Guardian Plan is likely to be redundant for individuals with I/DD who are receiving services. Most states require service plans that guardians and other family members participate in. These could easily be included as part of the evaluation of an individual for guardianship.

Visitor In Section 304, the addition of the visitor into the guardianship process adds a third party between the petitioner, the respondent, and the court. The visitor is given the responsibility to investigate, look into medical history, and make a recommendation to the court as to the appropriateness of guardianship. It raises many concerns including, what qualifications does the visitor have and how are they chosen? Do they have expertise in the myriad co-morbidities which may exist? The visitor’s feedback is purely substitute feedback, and as such, infringes upon the decision-making authority of the court and the vital and caring role the petitioner plays in the life of the respondent, especially when the petitioner is a family member and close friend.

Appointment of an Attorney Section 305, Alternative A and Alternative B, require the appointment of an attorney for the respondent, in some or all proceedings, whom the respondent must compensate. If the respondent is incapacitated, he or she is not in a position to provide direction to an attorney. The attorney would be engaging in substitute decision-making and could manipulate the respondent and work against a well-meaning and knowledgeable family guardian or close friend. Additionally, paying an attorney is a significant financial responsibility, especially for an incompetent person with limited income which in many cases may consist only of Social Security income.

Who Should Be Guardian Section 309 of the draft prioritizes the parties that can be guardian, placing family members last. A family member should be given the highest priority given their intimate knowledge of the individual and their having the greatest motivation to act in the best interest of the individual. Indeed, this is no different than the way most Americans lead their lives. When competent adults prepare their wills and estates or engage in personal and financial planning, most look to family members for advice and to help them protect their interests. Why should an incapacitated person not enjoy this same privilege? How can a law that is to protect vulnerable people be credible if it severs these individuals from their most loyal support systems? Section 310 compounds this insult by placing the “least restrictive means” to meet a respondents’ needs ahead of family members, putting technology and supported decision-making teams ahead of familial bonds. It should be noted, an incapacitated individual often requires assistance with technology, and therefore, the technology itself is subject to manipulation, and as such, so is the incapacitated individual.

When public or professional guardians are needed to protect vulnerable individuals, they must act with independence when they make decisions on behalf of their ward. For public guardians financed by the government, conflicts of interest arise. These guardians must not be pressured to make decisions that fulfill the agendas of government agencies rather than protect the interests of their wards, nor should they be pressured to adhere to an ideology that does not accept that there are individuals who cannot make decisions. VOR members have seen the adverse affects of conflicts of interests with public guardians. Model law and state courts should protect the right of all people with intellectual disabilities to be treated as individuals and not make presumptions based on their status as part of a class; nor should model law or state courts which address guardianship be unduly swayed by an ideology that does not respect the inability of some in their charge to engage in decision-making.

Termination or Modification of Guardianship Section 311 and Section 319 allows for the “adult subject to guardianship” to petition to have guardianship removed and an attorney provided. How is the incapacitated adult able to make such a determination? Such a provision potentially undermines the ability of the guardian to act in the ward’s best interest when the ward does not understand or accept the reasons for the guardians’ decisions.

Restrictions on Ability of Guardian to Protect the Ward Section 311 requires court authorization in order for a guardian to restrict communications and visitors with the ward. As the responsible party who could be held accountable if the ward is harmed, such a requirement unduly inhibits the guardian from carrying out his or her duty to protect the ward. To require the guardian to petition the court to exclude certain individuals from interacting with or visiting the ward fails to allow the guardian to use his or her best judgment in subsequent instances where contact may harm the ward. Delays caused by having to petition the court could place the ward in serious jeopardy.

In conclusion, Supported Decision-making as an alternative to guardianship does not live up to the standards for accountability and monitoring that is required in guardianship procedures. Discouraging families and close friends from taking on the responsibility of guardianship does a disservice to people with profound and severe cognitive disabilities who are not capable of speaking on their own behalf, or to individuals with mild or moderate
cognitive disabilities who are easily manipulated. Without the ability to give informed consent, these persons are unable to provide advance directives for their care or to designate a person with the authority to act on their behalf. When there is no guardian, service providers are left to make decisions that are most convenient for themselves without the oversight and protection of a caring third party without a conflict of interest.

VOR is deeply concerned about any effort to weaken the protections of guardianship. Attempts to replace guardianship with technology or Supported Decision-making affect not only those with severe intellectual disabilities but also people with I/DD who are vulnerable to manipulation and coercion by others as well as individuals who lack awareness of the consequences of their own actions which may cause harm to themselves or others.

Model Law for guardianship restricts guardian rights to act on behalf of incapacitated individuals: Part 1

The Uniform Law Commission (ULC) proposes model laws that promote consistency and uniformity in certain areas of the law among the states. A ULC committee on the “Guardianship, Conservatorship, and Other Protective Arrangements Act” has drafted a model guardianship law that, if approved by the Commission, would recommend to states extensive changes in guardianship procedures.

The proposed law embraces a controversial movement that has emerged in recent years to limit the use of guardianship and to replace it with alternatives to “substitute” decision making. Substitute decision-making occurs when a person lacks the capacity to make or communicate decisions on their own behalf, in some or all aspects of their lives, and a guardian is appointed by a state court with authority to make those decisions. Supported Decision-Making (SDM) for individuals with intellectual and developmental disabilities (I/DD) and other disabilities, promotes the idea that an informal network of advisors should be made available to the individual for support and that guardianship should be avoided at all costs. Proponents of SDM believe that all persons with disabilities, with almost no exceptions, have the ability to make decisions for themselves when given the support they need to do so.

[Read more about the Uniform Law Commission and Guardianship vs. Supported Decision-Making. Here is the draft of the proposed guardianship law.]

VOR, a national non-profit organization advocating for high quality care and human rights for people with intellectual and developmental disabilities, has submitted comments to the ULC committee on guardianship. The comments are the work of the VOR Issues Oversight Committee of which I am a member.

The Comments consist of a letter to David English, the chair of the ULC guardianship committee (Part 1) followed by specific comments on the text of the draft model guardianship law (Part 2). 

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Letter to David English, the chair of the Committee on Guardianship, Conservatorship, and Other Protective Arrangements Act

Dear Mr. English:

VOR is a national advocacy organization working to protect high quality care and the human rights of all individuals with intellectual and developmental disabilities (I/DD). We support a full range of services and residential options to meet the needs of this diverse population.

VOR’s membership consists of family members and guardians of individuals with intellectual and developmental disabilities (I/DD). We understand the importance of families and guardians in helping to ensure that individuals with I/DD have choices available to them that optimize needed services and supports and honor their unique personhood.

VOR has a responsibility to its members to advocate for guardianship policies and procedures that protect the health and safety of people with I/DD and respect their civil rights. We understand that the ULC Committee on Uniform Guardianship, Conservatorship, and Other Protective Arrangements Act, chaired by David M. English, JD, is finalizing its model act. We also understand that, Uniform Acts are model statutes produced by nongovernmental bodies that may become law if they are independently adopted, in whole or in part, by state legislatures. Because of the potentially broad affect of this Act on guardianship policy, VOR is concerned with some of the proposed changes.

Specifically, we are concerned with changes that would incorporate the principles of “Supported Decision-Making” (SDM) into guardianship law and promote its use as a substitute for guardianship. SDM, as it is promoted by organizations that receive funding from the federal Administration for Community Living, is based on a belief that everyone with a disability can make his or her own decisions with almost no exceptions. Our families know better from their experiences of living with disabled family members who have complex cognitive, physical, and behavioral disabilities. Some function at the level of infants or young children or have intellectual and behavioral disabilities that prevent them from understanding the ramifications of their decisions. Although some people with less severe intellectual disabilities may find that SDM gives them the tools they need to make decisions, there are others who do not recognize or appreciate risky or dangerous situations and need guardianship to prevent them from being harmed by the consequences of their decisions.

Although SDM is meant to be an alternative to substitute decision-making, we believe that SDM is another form of substitute decision making, but without the accountability of guardianship. These concerns are outlined in VOR’s attached Position Paper on Guardianship and Supported Decision-making.

We are providing comments on the “Guardianship, Conservatorship, and Other Protective Arrangements Act.” VOR members who serve as guardians for their intellectually disabled family members consider guardianship to be an honor, a privilege, and a labor of love. Our members are representative of the people who must live up to and implement the standards and policies of this proposed model law, and as such, our input is crucial to help ensure that the model legislation reflects the real world demands and needs of individuals with intellectual disabilities in relation to guardianship. We welcome your sincere consideration of our comments and look forward to your response.

Sincerely,

Caroline Lahrmann
VOR President

Charlie Gard: Who decides when there are no right answers?

It goes against my bleeding-heart liberal tendencies to praise an article by a well-known conservative commentator like Charles Krauthammer, but the issues he writes about in this instance rise above the usual party politics and left-right positions on medical care and morality. Krauthammer’s background and life experiences give him unusual insight into the dilemma facing the family of the infant Charlie Gard whose parents are fighting a London hospital to release him so that he can undergo experimental medical treatment that may or may not save his life.

Charles Krauthammer graduated from Harvard medical school in 1975 and became a psychiatrist before taking up a career as a columnist and TV commentator. He is also physically disabled from a diving accident that occurred during his first year of medical school.

In his Washington Post opinion column, “What to do for little Charlie Gard”, 7/20/17, Krauthammer summarizes the case of the eleven-month old infant:

“One cannot imagine a more wrenching moral dilemma than the case of little Charlie Gard. He is a beautiful 11-month-old boy with an incurable genetic disease. It depletes his cells’ energy-producing structures (the mitochondria), thereby progressively ravaging his organs. He cannot hear, he cannot see, he can barely open his eyes. He cannot swallow, he cannot move, he cannot breathe on his own. He suffers from severe epilepsy, and his brain is seriously damaged. Doctors aren’t even sure whether he can feel pain.

“For months he’s been at the Great Ormond Street Hospital in London. His doctors have recommended removing him from life support.

“His parents are deeply opposed. They have repeatedly petitioned the courts to allow them to take Charlie for experimental treatment in the United States.”

The issue here is that under British law, when doctors and parents disagree on treatment for a child in such dire circumstances, the court becomes the arbiter of the best interests of the child and may overrule the parents right to make medical decisions. In this case there are no accusations that the parents are incapable of making such decisions or that they have in any way mistreated or neglected their infant son. The parents have raised funds and others have agreed to provide treatment for free if it has any chance of helping the child, so the cost of treating Charlie is not an issue.

Krauthammer concludes that the parents are wrong and the doctors and judges are right, but “despite all these considerations, I would nevertheless let the parents take their boy where they wish.” I agree with almost all of what he says, except for this: “Charlie’s suffering is literally unimaginable and we are simply prolonging it.” Because it is “unimaginable”, the parents are in the best position to determine whether the child is suffering and to what extent.

My son Danny, who is 40 years old and has profound physical and cognitive disabilities, is obviously not in the same situation as Charlie Gard except in the respect that Danny has no way of communicating specifically about his condition and what he is experiencing. As his parents, my husband and I know how he looks when he is unhappy, uncomfortable, or in pain. Sometimes we are wrong, but mostly we know better than anyone else.

In recent months, Danny has had many trips to the emergency room for seizures and two hospitalizations for pneumonia. I can say without a doubt that he has never been more miserable than when he was in the ER having trouble breathing with a temperature of 103 degrees and waiting for the diagnosis of pneumonia so that he could start on antibiotics that would relieve his misery over the course of the next day. As for his seizures, his normal (for him) movements are often mistaken as seizure activity by the experts when he is just expressing his exuberance for something he finds highly entertaining, such as the beeping of alarms going off in the ER. He also sometimes appears to be grimacing in a way that most people would interpret as pain, when we know he is expressing extreme happiness and amusement. We don’t want Danny to suffer, but sometimes suffering is more in the eyes of the beholder who cannot fathom what it is like to be Danny and assumes that suffering is part of his condition when it is not.

Krauthammer acknowledges the exceptions for when parental decisions should be overruled as well as the ulterior motives of the state, when it gives priority to cost savings over the welfare of an individual child. He is also skeptical of miracle cures. Nevertheless, he says, “...there’s a reason why, despite these exceptions, all societies grant parents sovereignty over their children until they reach maturity. Parents are simply more likely than anyone else to act in the best interest of the child.”

A final ruling on the case of Charlie Gard is expected on July 25th, 2017.

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Here is another Washington Post article on the Charlie Gard case,“The dying child who became an ideological football” by Ruth Marcus, 7/6/17:

“…as tends to happen in these circumstances, individual tragedy is susceptible to being hijacked in service of a larger, sometimes misleading point. So the terrible case of Charlie Gard serves both to raise difficult and important questions about the proper contours of parental rights — and to sound unwarranted alarms about the horrors of socialized medicine and the insidious arrival of death panels. Charlie is at once a dying child and an ideological football.”

...and another Washington Post article, "Who gets to decide if Charlie Gard's life is worth living? It shouldn't be his doctors" by Charles Camosy, 7/13/17:

"...The values of the parents should be the ones used when making the decision, especially when they do not require the use of shared community resources. There is no basis for arbitrarily substituting the moral judgment of a physician — and plenty of reasons not to."

Senate Bill to "Repeal and Replace" Obamacare targets Medicaid expenditures to reduce federal spending

According to the federal Medicaid website, “Medicaid provides health coverage to millions of Americans, including eligible low-income adults, children, pregnant women, elderly adults and people with disabilities. Medicaid is administered by states, according to federal requirements. The program is funded jointly by states and the federal government.” As of April 2017, it provides health care coverage to 69 million people.

The purpose of the GOP plan to repeal and replace Obamacare appears be to be to reduce federal expenditures so that Congress can afford to give tax cuts to mostly wealthy citizens. Whether you agree with this assessment or not, the plan will have that effect.

People with disabilities rely on Medicaid for their health care coverage as well as for services they need to live safely in settings appropriate to their needs. Here are excerpts from two articles, that explain proposals to place caps on federal Medicaid spending.

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From Disability Scoop, “Caps Would Pinch Medicaid For Decades To Come” by Michelle Diament, 6/30/17:

“The Republican proposal under consideration in the Senate would convert Medicaid to a per-capita cap system, much like a version of the legislation passed by the House of Representatives in May.

“Currently, Medicaid operates as an entitlement program meaning that services are provided to anyone who meets eligibility requirements. The federal government provides matching grants to states to help cover the cost.

“Under a per-capita cap system, however, the federal government would chip in a fixed amount for each beneficiary regardless of the true cost of their care and leave states to make up any difference.

"The budget office previously projected that the Senate plan would mean $772 billion less in federal Medicaid spending over the next decade, a drop of 26 percent.” 

...

“Individuals with disabilities represent just 15 percent of Medicaid beneficiaries, but account for 42 percent of the program’s costs, according to the Kaiser Family Foundation.” [emphasis added]

Read the full article here

From Together by Choice, “The Impact of the Proposed Medicaid Cap on Individuals with Intellectual and Developmental Disabilities” by Scott Mendel, 6/22/17:

“…The details of the bill were released today. It seeks to cap the federal portion of Medicaid at each state’s current per capita Medicaid expenditure. In addition, the federal portion of Medicaid would increase by the rate of inflation as measured by the consumer price index. Historically, the per capita cost of Medicaid has increased at a faster rate than the consumer price index.

"The Effect of a Medicaid Cap on Individuals with Intellectual and Developmental Disabilities

“Capping the federal portion of Medicaid will have a serious detrimental effect on individuals with intellectual and developmental disabilities. Individuals with intellectual disabilities suffer from a wide range of disabilities, from autism to down syndrome to cerebral palsy. The common feature is that individuals with intellectual disabilities do not function at an adult level. Many function at the level of a three or five year old and are in need of 24 hour care. For these individuals, Medicaid is the only option available to them to cover the cost of the intensive 24 hour care they need. Most individuals with intellectual disabilities will never have full-time employment, will never receive health insurance coverage through a job, and do not have income sufficient to purchase private health insurance. They are totally reliant on Medicaid.

“Capping the federal portion of Medicaid means that the portion of the cost of meeting the needs of individuals with intellectual disabilities that will be picked up by the federal government will shrink…[costs] will be shifted to the states or to the individuals. Neither can afford to pick up the portion that the federal government will no longer cover. In many states, services for individuals with intellectual disabilities are already under funded…These most vulnerable members of our society have nowhere else to turn to receive the services they need."


Read more  to see the “Call to Action” from Together for Choice with specific recommendations on how to contact Senators to voice your opinion on how these proposals will affect your disabled family member.

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More resources from the Kaiser Family Foundation, Medicaid's Future