VOR position paper on Guardianship vs. Supported Decision-Making

VOR is a national organization that advocates for high quality care and human rights for people with intellectual and developmental disabilities. VOR advocates for a full range of options to address the full range of needs of people with intellectual and developmental disabilities and their families.

The following is a Position Paper  from 11/2016 on Guardianship vs. Supported Decision-Making. 

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Issues to Consider Regarding Guardianship and Supported Decision-Making
By VOR's Issues and Oversight Committee on Guardianship Rights

Individuals with intellectual and developmental disabilities (I/DD) and their parents, family members and guardians may have heard about Supported Decision-Making (SDM), an initiative that could affect their decision-making rights. Some see SDM as an alternative to guardianship, while others view it as an attempt to remove the legal instrument that provides a safety net for vulnerable individuals.  

VOR is a national organization that advocates for high quality care and human rights for individuals with I/DD. We understand the valuable role that guardians play in the emotional and physical well-being of their wards. As advocates who appreciate the diversity of the I/DD community and the need for a wide array of supports, we want to ensure that guardians and family members are aware of the issues connected to Supported Decision-Making so that they can make informed decisions about the care of their loved one with disabilities.

What is Guardianship?

Guardianship is the legal process whereby a state court appoints a person or organization to have the care and custody of an adult or child who has been determined to be legally incapacitated. Parents are the assumed legal guardians of their minor children, but a guardian may be appointed for a child if the parents are not able to fulfill that role. An incapacitated adult is one who has been determined by a court to lack capacity to make some or all personal and/or financial decisions and for whom a guardian has been appointed.

Guardianships are awarded to protect the “ward,” the individual with a disability, from abuse, neglect, and exploitation. Guardians are expected to act in the best interests of the individual and to make decisions over medical, psychiatric, behavioral, and all other aspects of the person’s care that are authorized by the court based on the degree to which the individual is incapacitated. Legal guardianship is both a responsibility and a privilege.

What is Supported Decision Making?

The Supported Decision-Making movement is a new initiative that promotes the idea that, with almost no exceptions, all people with I/DD can make their own decisions with support from an informal network of advisors. Supporters of SDM claim that empowering individuals to make their own decisions would make most guardianships unnecessary. The advisors do not need to be court-appointed and do not bear any responsibility for ensuring the success of outcomes. Supported Decision-Making proponents view the “Right to Fail” as an important freedom, regardless of the individual’s ability or vulnerability.

Issues to Consider

Supported Decision-Making might help those who need guardianship the least, if at all. In the process of attempting to change guardianship laws, it could weaken protections for those who are the most vulnerable. Those protected by guardianship include people with severe intellectual disabilities, people with I/DD who are susceptible to manipulation and coercion, and people with I/DD who lack awareness of the consequences of their actions and may cause harm to themselves or to others.

The primary goal of SDM is to move away from “substituted decision-making”, where the guardian makes decisions for the incapacitated ward. Proponents of SDM make the assumption that all people with disabilities are capable of making all decisions for themselves with help from a support team. This approach would then, in fact, be doing what SDM proponents criticize: substituting the judgment of the incapacitated ward with the judgment of a “support team”.

Guardians of people with I/DD usually have an existing network of informed persons to assist them in making decisions for their wards, including other family members, direct care providers, and medical personnel. This is what SDM promotes, but without the protection of court-ordered guardianship. The more individuals are able to express their wishes and play an informed, responsible role in their own decision-making, the more their participation should be included. But, it is irresponsible to remove an individual who lacks the capacity to make his or her own decisions from the protection of the court and ongoing evaluation. Most individuals with intellectual disabilities change over time, their needs change accordingly, and their ability to make their own decisions in a responsible manner should be examined at regular intervals.

VOR maintains that problems with guardianship can be avoided through strong enforcement and monitoring and better access to information on guardianship. To eliminate guardianship or make it more difficult for family members and friends to become guardians will leave people with I/DD more vulnerable to the abuse, exploitation, and neglect that guardianship is designed to prevent.

When people with I/DD and their families are presented with Supported Decision-Making, the should consider the following: 

• The Developmental Disabilities Assistance and Bill of Rights Act (DD Act) states: “individuals with developmental disabilities and their families are the primary decisionmakers regarding the services and supports such individuals and their families receive and play decisionmaking 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)
• Is the individual prepared to take on the responsibility of Supported Decision-Making?
• Is the individual’s support group prepared to address the changing needs of the individual over the course of their lifetime? How will you maintain and ensure a consistent team of advisors?
• How do you reconcile the “Right to Fail” with the safety and comfort of the individual?
• How do you determine if SDM is not working and legal guardianship would be appropriate?
• You and your loved-ones with I/DD have the right to decide what is best for your unique situation, based on individual need. Take your time in making any major decisions regarding guardianship.

VOR does not oppose the use of SDM for all who voluntarily wish to use methods promoted by advocates of SDM.  All decisions rest with the individual or the legal guardian as authorized by a state court and it must be understood that guardianship procedures are available to those who need them, regardless of their participation in SDM activities. As such, there is no reason to give up guardianship in order to use Supported Decision-Making.

Changes to guardianship laws in many states have already been proposed. Families should keep abreast of these changes and advocate for their loved-one with state officials if the changes could weaken the protections upon which he or she relies. VOR will do its best to keep you informed. Our vulnerable family members deserve nothing less than the protections that family guardians can provide.

Home Help Services in Michigan : Some reforms, but are they enough?

On November 10, 2016, I wrote a blogpost on fraud and abuse in the Medicaid-funded Personal Care Services program. Michigan's version of this program is known as Home Help Services. This is a follow-up on updated information on MIchigan's program of in-home support for people with developmental and other disabilities.

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In June 2014, the Michigan Auditor General released a report on the Michigan Home Help Program that revealed multiple problems with fraud and abuse in the system of Medicaid-funded home care for people for with developmental and other disabilities. This was covered by The DD News Blog along with reforms approved by the state including criminal background checks on caregivers. 

My two adult sons with DD live in a group home and do not receive services through the Home Help Program. These services are included in the care that the group home provides along with other services to meet their extensive needs for care and supervision. The Home Help Program is set up to provide non-medical services in one’s own home or in the home of another such as a relative or friend. They include help with activities of daily living.  Community Living Supports that facilitate an individual’s independence, productivity, and promote inclusion and participation are usually provided under Michigan’s Medicaid waiver program for DD. These services are not the same as Home Help Services and are administered and funded under a different program.

I have heard complaints about the computerized system that the state has set up for registering with the Home Help program and receiving payments for services, but beyond that, I don’t know much about it. If anyone would care to leave a comment on this blogpost on how well the Home Help program is working, I would be glad to hear from you.

More information on the Michigan Home Help program:

Here is the Michigan Home Help Website. 

This includes an update on the Electronic Verification System (EVS) for Home Help Providers who are often parents or other relatives of the person receiving care. To my mind, the most important item here is the Provider Hotline at 1-800-979-4662 for assistance with the EVS. 

There are links to all kinds of information. I linked to Provider Trainings and came up with this message: “Contact your local DHS (Department of Human Services) office for information available in your area.” Apparently, training is handled locally, but I don’t know if there are state guidelines for what is available. 

Here are Frequently Asked Questions (FAQs) about the Home Help program with important contact information on all aspects of the program for providers. 

One revealing link is to pay rates by county for caregivers and agency providers, as of 1/1/16.  Most counties pay $8.50/hour to individual providers with a few paying up to $11/hour. Wow! This is hard work, but don’t expect that to be reflected in individual pay rates.

Michigan has a registry for providers, but does not have a link to a list of home care workers. For people interested in providing services for additional clients, call 800-979-4662 to be placed on the registry.

There is more detailed information on the Website that will be of interest to providers of services.

Fraud and abuse in the Medicaid Personal Care Services program

“Stunning” is the word that comes up most often to describe this week’s election. 

The GOP has promised to repeal Obamacare with few detailed plans, as yet, to replace it or preserve parts that have worked and are generally popular. This uncertain future makes it hard to comment on policy regarding Medicaid-funded healthcare and caregiving for people with DD. Nevertheless, an article, “Report Finds Caregiver Fraud Widespread” by Melissa Bailey, 11/8/16, that examines Medicaid in-home Personal Care Services is relevant for now and will continue to be relevant as long as these services are publicly funded. [The article appeared in Kaiser Health News (KHN) and was republished by Disability Scoop.]

According to the article, the Medicaid Personal Care Services program (known as Home Help Services in Michigan) is “rife with financial scams, some of which threaten patient safety…” A report from the Office of Inspector General (OIG) for the US Department of Health and Human Services recommends that the federal Centers for Medicare and Medicaid Services (CMS) improve oversight and monitoring of the program "...to prevent and detect improper payments, facilitate enforcement efforts, and reduce the risk of beneficiaries being exposed to substandard or otherwise harmful care.” 

Personal Care Services “provide non-medical assistance to the elderly, people with disabilities, and individuals with chronic or temporary conditions so that they can remain in their homes and communities. Typically, an attendant provides PCS. In many States, PCS attendants work for personal care agencies, which are enrolled in the Medicaid program and bill for services on the attendants' behalf…”

More from the KHN article:

“The OIG has investigated over 200 cases of fraud and abuse since 2012 in the program, which is paid for by the federal government and administered by each state. These caretakers, often untrained and largely unregulated, are paid an average of $10 per hour to help vulnerable people with daily tasks like bathing, cleaning and cooking.

“The report exposes vulnerabilities in a system that more people will rely on as baby boomers age. Demand for personal care assistants is projected to grow by 26 percent over the next 10 years — an increase of roughly half a million workers — according to the U.S. Department of Labor.

“‘This type of industry is ripe for fraud,’ warned Lynne Keilman-Cruz, a program manager at Alaska’s Department of Health and Social Services who has investigated widespread fraud. The risks increase because the care takes place out of view in people’s homes, and because neglected patients may not advocate for their own care.”

The OIG report calls on CMS to “establish national qualifications, including background checks, and ensure every claim identifies the worker and time of service. It also called on CMS to require states to enroll all personal assistants, so they can be tracked by unique numbers.” These are all sensible recommendations to reduce fraud and protect Medicaid beneficiaries. 

CMS, however, is “treading lightly” in deference to disability groups who fear that stricter regulations may limit beneficiaries’ access to caretakers. This fear is not unfounded, but why are disability advocates willing to trade access to caretakers for the perpetuation of abusive and fraudulent practices that undermine the program and risk the safety of people with disabilities? Is it too much to ask advocates who claim to represent our family members with disabilities to take a stand in favor of both access and high quality care? 

Instead of mandatory background checks and training for Personal Care Services, CMS has opted to give $50 million in grants to 26 states to set up background check programs. Instead of requiring mandatory training, CMS has offered states the option of offering basic caretaker training “without usurping beneficiary decisions on what skills are most appropriate for their home care workers”. These measures may be a step in the right direction, but why not require training specified in a plan of care based on individual need and preference, rather than leaving it up to chance as to whether the home care worker has the skills to do the job he or she is hired to do?

Here are excerpts from another article from Kaiser Health News on California’s In-Home Supportive Services Programs,  “Lots Of Responsibility For In-Home Care Providers — But No Training Required” by Anna Gorman, 1/6/15:

“No overall training is required for the more than 400,000 caregivers in California’s $7.3 billion In-Home Supportive Services Program (IHSS) for low-income elderly and disabled residents. Without instruction even in CPR or first aid, these caregivers can quickly become overwhelmed and their sick or disabled clients can get hurt, according to interviews with caregivers, advocates and elder abuse experts.”

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"IHSS was never intended to be a medical program. The caregivers are distinct from visiting nurses and the certified home health aides often dispatched after a hospital stay. IHSS caregivers are not certified or licensed and are hired to do personal care and household tasks.

“But more than a quarter of IHSS clients are 80 or over, and many have chronic health conditions or dementia. In these and other cases, caregivers can end up providing basic medical care–helping to administer insulin shots, manage other medication or dress wounds, for instance.”

Here again the issue of training is controversial:

“A union that represents caregivers ... sees advantages to a minimum level of training.

“SEIU-United Healthcare Workers West proposed a statewide initiative last year that would have required 75 hours of training, but the union didn’t get enough signatures to put the measure on the ballot. SEIU plans to try again for the 2016 ballot.

“Requiring training would ‘save lives,’ said Loretta Jackson, who serves on the union’s executive board and is an IHSS caregiver in Sacramento. It would also reduce the risk of injuries to caregivers, she added.”

But disability advocates balk at requirements that might threaten access to caregivers. 

“Eileen Carroll, the deputy director of the California Department of Social Services, said the program doesn’t have a lot of training requirements because it was set up to give clients the choice of how they want their care delivered.”…

“Carroll said the state is in a tough situation. Training is a positive thing, she said, 'but you have a very strong adult disabled community in this program who … oppose any mandatory training.’

"Many disability rights advocates say a training mandate would make it more difficult for IHSS consumers to find caregivers, chip away at clients’ autonomy and drain resources from the program.

“‘The idea of choice is really paramount,’ said Deborah Doctor, legislative advocate at Disability Rights California. ‘Anything that puts a requirement that erodes that choice is a problem.’”

Again, why not tie the training for the home care worker to the individual needs of the person receiving care with that person’s participation in determining what is needed? That way the appropriate level of training would be provided leading to both access and higher quality care without compromising the beneficiary's right to choice.

The cost of improving the Personal Care Services program is the unspoken issue influencing the CMS decision on whether to impose higher standards on states to better ensure the safety of people needing care. These costs also stoke the fear of disability advocates that access to caregivers will be adversely affected. 

Is it too much to ask of federal regulators, state agencies, and especially disability advocates to take a more nuanced approach to the costs and benefits of a system that reduces abuse and delivers better care to those receiving services? It may be that having higher standards reduces many costs over time. And if it costs more to deliver better care and avoid the tragic consequences of allowing abuses of the system to continue, this may be a cost that the public is willing to bear. After all, more and more families are affected by the responsibility of taking care of aging and disabled family members and would rather see a system that provides higher quality care that they can rely on, than one that limps along failing to provide even a basic level of care that protects their loved ones from harm.