Thursday, January 5, 2017

Michigan : Washtenaw County events and news

The first event coming up this month is sponsored by Intentional Communities of Washtenaw (ICW), a non-profit group that is organized to help provide housing and services to people with DD:

Learn About the New Washtenaw CMH Strategic Plan
Speaker: Trish Cortes, CMH Director
Tuesday, January 10, 2017
7 - 8:30 P.M.
Washtenaw ISD at 1819 South Wagner Rd., Ann Arbor, MI 48103 (Between Liberty and Scio Church Roads)


Washtenaw Community Mental Health is the county agency that funds most Community Living Support (CLS) services for persons with disabilities. This month, the ICW program will provide family members with the latest information about changes at the agency and at the state level that will affect our loved ones. 

Our speaker will be Patricia Cortes, CMH Director. Trish holds a Bachelors degree in Nursing and a Master degree in Community Health Nursing from the University of Michigan. She has held a variety of positions with Washtenaw County since 2000 including Mental Health Nurse,Health Service Supervisor, Program Administrator - Developmental Disabilities, Program, Director of Health Service Innovation, and Director of Community Support and Treatment Services (CSTS) prior to becoming CMH Director. She has established and maintained countless internal and external partnerships in the community. She recently has led the process of developing the CMH Strategic Plan. 

Our monthly meetings are open to the public and offer a great opportunity to learn more about ICW and to meet other families with similar challenges. 

We hope to see you there.

Al Blixt, Board Chair
Intentional Communities of Washtenaw 

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St. Louis Center in Chelsea, MI is a "caring residential community for people with intellectual and developmental disabilities". It is sponsoring a program for special needs families on "Securing the Future":


Securing the Future 
for Special Needs Families 
Protect, Provide and Prosper 

Thursday, February 16, 2017 
7:00 - 9:00 pm 

St. Louis Center 
16195 W. Old US Hwy. 12, Chelsea MI 48118
Family Welcome and Orientation Center 


Many families with special needs children or adults have a difficult time navigating the future for their loved ones, and advanced planning can ensure a positive quality of life for years to come. Our advisors can help special needs families by explaining the ins and outs of saving and investing to ensure long term success. Please join us for an opportunity to ask our distinguished panel about financial investments, special needs trusts, and guardianship issues to obtain the answers you seek while planning for the future. 


Speakers: Dan Johnson, Investment/Financial Advisor, Northwestern Mutual, Southfield, MI.....Joshua R. Fink, Guardianship - Attorney, *Fink & Fink, Pllc*, Ann Arbor, MI;..... Daniel R. Shirey, Special Needs Trusts *Kitch, Drutchas, Wagner, Valitutti & Sherbrook*, Detroit, MI.


Please contact Joe Yekulis, PR Director, at SLC at 734-475-8430 
for more information or to register. 
To learn more about St. Louis Center, visit our website www.stlouiscenter.org 

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The "Village" at St. Louis Center

Groundbreaking Marks New Era for St. Louis Center (9/29/16)

After several years of planning and fundraising, the St. Louis Center finally celebrated a groundbreaking ceremony for St. Louis Guanella Village with about 275 of their closest friends on Thursday, September 29, 2016. The “Village” is considered an “intentional community,” with the construction of four new children’s homes immediately for children with intellectual and developmental disabilities. The “Village” will also include other segments of homes and townhomes for people with I/DD and their families. In spite of the rain soaked evening, supporters came from far and wide to enjoy a fine selection of hors d’oeuvres provided by Food Art, Inc. and speeches from key supporters and local dignitaries. Development Director Peggy Cole was moved that the time had finally arrived to sink shovels into the ground. “We owe this moment to our many supporters who see St. Louis Center as a bright light that is leading the way for others. We have many hard working committee members who share our dream of the St. Louis Guanella Village, and have worked to make this happen.”... 

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For more information on St. Louis Center's Guanella Village see the website:

"New housing built in the Village will guarantee the provision of the full continuum of care for aging people with I/DD and will provide housing and care opportunities for them and their families."



Employment choice for DD includes facility-based workshops


VOR is a national organization that advocates for a full range of services, residential options, and employment opportunities for people with Intellectual and developmental disabilities. This is a position statement from the VOR Website: 

VOR's Position on Sheltered Workshops


By Harris Capps and Joan Kelley

Sheltered Workshops are private non-profit, state, or local government entities that provide employment opportunities for individuals with disabilities. Persons served in this environment may include those with developmental, physical, and/or mental impairments, ranging from mild to extreme/profoundly affected individuals. Sheltered workshops:
  • Provide prevocational training, with the goal to prepare for competitive employment for available jobs in the open labor marke. 
  • Emphasize support of individual needs, based on ability to choose work activities that fit with a person’s skills 
  • Often include additional training in personal care, living skills and developing social skills 
  • Honor the depth and scope of the DD population, recognizing that some individuals may not ever be able to be competitively employed 

After completing a rehabilitation program, many individuals are able to leave the workshop environment and enter regular employment, if there is a job available for which they qualify. Individuals unable to obtain regular employment because of the severity of their impairments or unavailability of jobs can remain in the workshop environment. Individuals performing services are paid a fraction of, or up to minimum wage, depending on their capacity to perform the services. [1]


While work is the main focus at facility based programs, sheltered workshops also provide opportunities for people with disabilities to challenge themselves, further their self-esteem and self-confidence, develop friendships and engage in their communities. Because of the supports and protections in place, those with more severe/profound impairments can find success in meaningful and productive activities which may not otherwise be possible for them in mainstream businesses. Sheltered workshops often include adult day services which include personal care, living skills, developing social skills, etc.

Often, individuals with disabilities too severe for sheltered work rely on day programs for community integration and meaningful and constructive activities during the day. These facility-based programs also provide opportunities for building self-esteem, confidence, social skills and friendships so important for both mental and physical health.

Specialized Supports

For those individuals with intellectual and developmental disabilities (I/DD) who enter the competitive workforce, specialized supports are often required to ensure a successful work experience. Proponents of “supported employment” contend that as long as the appropriate supports are in place, the goal of “real” employment should be achievable for everyone with a disability. While this is a laudable goal, society must recognize the pressures that exist in business that are driven by economic issues, deadlines and competition in the market. For many with I/DD, these realities interfere with their ability to maintain competitive jobs long-term and for a full eight-hour workday.

Eliminating Special Minimum/Commensurate Wages

Provisions for Special Minimum Wage Certificates, under the Department of Labor, Fair Labor Standards Act (FLSA) of 1938, Section 14(c), help people with disabilities obtain jobs in a competitive workforce. Employers who receive a certificate from the U.S. Department of Labor’s (DOL) Wage and Hour Division (WHD) have the ability to pay special minimum wages (below the federal minimum wage) to employees who have disabilities, if the disability affects job performance. [2]

This provision of the FLSA is often inaccurately referred to as offering a “Sub-Minimum Wage” in what appears to be an intentionally derogatory manner to dampen public support for the program. There have been formal attempts to eliminate Special Minimum Wage Certificates altogether One example, H.R. 831, is a bill intended to phase out special wage certificates under the Fair Labor Standards Act.

Efforts to end the provision of special minimum wage certificates could adversely affect individuals with significant and profound disabilities if they are are unable to produce goods at the same rate as less disabled or non-disabled workers. Liability issues, and the additional costs involved with providing necessary specialized supports in the work environment can also become disincentives to hire individuals with the most significant needs. Offering a special minimum wage incentivizes and enables employers to provide employment to individuals with disabilities who may not otherwise be given the opportunity to work.

Why You Should Be Concerned

Many of the taxpayer-funded government agencies and non-profit organizations that disparage Intermediate Care Facilities (ICF’s) as ”isolating” use the same criteria to stigmatize sheltered workshops. They deliberately disregard the importance of sheltered workshops and facility-based day programs to the portion of the I/DD population who depend upon them. These organizations, often taxpayer funded entities, have legislated against sheltered workshops in the same manner in which they have attacked ICF’s, despite the lack of employment opportunities for individuals with I/DD, and the fact that few employers have an incentive or the ability to hire individuals with profound disabilities. Integration into a non-disabled workplace is not the primary goal for all individuals with I/DD, and should not be given precedence over safety, productivity, or a sense of community among one’s peers.

The continued, and many believe intentional, misinterpretation of the Supreme Court’s Olmstead decision permeates numerous policies, including the Work Innovation and Opportunities Act (WIOA), which severely limits work settings and rehabilitation programs for disabled persons. Such policies negatively affect individuals with the most extreme and profound disabilities by eliminating the individual’s right to choose the work environment most appropriate to their unique needs. [3]

In its recently released 13-page Guidance document on Employment [4], the Department Of Justice (DOJ) uses the word “segregated” or “segregation” no less than 40 times when referring to sheltered workshops. At the same time, it picks and chooses selective passages from Olmstead, deliberately ignoring those passages that address the needs of those individuals with disabilities who rely upon higher levels of care. In doing so, the DOJ marginalizes our most vulnerable citizens and even puts them at risk by ignoring warnings that permeate Olmstead’s majority and concurring opinions.

DOJ’s selective interpretation of the Supreme Court Olmstead Decision amounts to an unwarranted attack on the portion of the I/DD population with the most complex need, in that it eliminates the settings that best support them. The DOJ refuses to acknowledge that individual choice is paramount in both residential and employment options, and thereby violates the civil and human rights of vulnerable citizens by refusing to meet the need for a wide range of programs to support that choice. People with significant disabilities deemed not qualified to work would be forced to stay at home, receive no wages, and be denied the tangible and intangible benefits of work.

States Must Stand Up for Their Citizens with I/DD

Families seeking answers when they find their loved one’s sheltered workshop or day program under attack are often told of recent CMS rule changes by state officials. State officials, however, often fail to take advantage of the opportunities CMS provides within the rule changes to allow states to maintain these programs with adjustments.

The Centers for Medicare and Medicaid Services (CMS) makes clear in their guidance that facility based settings are not prohibitedand that states have flexibility in determining what those services look like. In fact, CMS guidance states, “The rule creates a more outcome-oriented definition of home and community-based settings, rather than one based solely on a setting’s location, geography, or physical characteristics.” [5]

CMS’ publication of “HCBS FINAL REGULATIONS 42 CFR Part 441: Questions and Answers Regarding Home and Community Based Services” [6] provides further clarification to the new rules:

Question 4, page 10: “Does the regulation prohibit facility-based or site-based settings?”

Answer: No.

“The regulation requires that all settings, including facility- or site-based settings, must demonstrate the qualities of HCB settings, ensure the individual’s experience is HCB and not institutional in nature, and does not isolate the individual from the broader community. In particular, if the setting is designed specifically for people with disabilities, and/or individuals in the setting are primarily or exclusively people with disabilities and on-site staff provides many services to them, the setting may be isolating unless the setting facilitates people going out into the broader community.”

“We note, however, that states have flexibility in determining whether or when to offer HCBS in facility-based or site-based settings, as the regulation only establishes a floor for federal participation.”

Question 5, Page 10: “Do the regulations prohibit individuals from receiving pre-vocational services in a facility-based setting such as a sheltered workshop?”

Answer: No

“Therefore, a state could allow pre-vocational services delivered in facility-based settings that encourage interaction with the general public...”

“We note, however, that pre-vocational services may be furnished in a variety of locations in the community and are not limited to facility-based settings, and that states have flexibility in determining whether and when to use facility-based settings.”

Question 6, Page 11: “Will CMS allow dementia-specific adult day care centers?”

“The HCBS regulations do not prohibit disability-specific settings... the setting must meet the requirements of the regulation, such as ensuring the setting chosen by the individual is integrated in and supports full access of individuals...to the greater community...”

Question 7, Page 11:“Can a day service that has both HCBS waiver participants and ICF residents provide Medicaid-covered HCBS in an ICF/IID?”

“If the state believes that the setting meets the HCB settings requirements and does not have characteristics of an institution, the state can follow the process to provide evidence and demonstrate that the setting can or will comply with the HCB setting requirements or regulations.”

VOR encourages families to point this guidance out to state officials and hold them accountable for their duty to provide safe and appropriate services for the vulnerable individuals they serve.

Conclusion

  • VOR asserts that sheltered workshops and facility-based day programs are also supported employment services, allowing individuals with intellectual and developmental disabilities to pursue their skills and interests in the most integrated setting possible according to their individual needs and capabilities. They provide hundreds of thousands of individuals with productive employment, responsibility, necessary structure and the opportunity to achieve and to measure their own skills and to work toward improving them.
  • VOR believes in providing more, not fewer, service options to meet the wide range of intellectual and developmental disabilities. While expanding programming for individuals that can benefit from it should also be pursued, vital existing services that are clearly meeting needs should be retained.
  • VOR asserts that programs and services for people with disabilities, whether residential or employment focused, must be based on individual choice, need and capabilities in order to be successful, as stated in Olmstead
  • VOR supports supported employment services in community settings for individuals who are capable of working in this capacity and can benefit from these services.

There is a place for both integrated and facility-based employment services, as we as a society provide for the full continuum of care for individuals with disabilities as required by the U.S. Supreme Court Olmstead decision.


[1] Social Security, Program Operations Manual System, RS 02101.270 https://secure.ssa.gov/apps10/poms.nsf/lnx/0302101270

[2] Goodwill Industries, “Employment of People with Disabilities through FLSA Section 14 (c) http://www.goodwill.org/wp-content/uploads/2013/06/Goodwill-14c-Fair-Wages-Position-Paper.pdf

[3] U.S. Department of Labor Wage and Hour Division Fact Sheet #39H https://www.dol.gov/whd/regs/compliance/whdfs39h.pdf

[4] DOJ Statement on Application of Integration Mandate of Title II of the ADA and Olmstead to State and Local Governments’ Employment Service System for Individuals with Disabilities https://www.ada.gov/olmstead/olmstead_guidance_employment.pdf

[5] CMS Fact Sheet: Summary of Key Provisions of 1915(c) HCBS Waivers Final Rule https://www.medicaid.gov/medicaid/hcbs/downloads/1915c-fact-sheet.pdf

[6] CMS, HCBS Final Regulations 42 CFR Part 441: Questions & Answers Regarding HCBS Settings https://www.medicaid.gov/medicaid/hcbs/downloads/q-and-a-hcb-settings.pdf

Tuesday, January 3, 2017

Michigan: Important information for Washtenaw County DD adults using "self-determination"

This is an email from a parent who asked me to pass on this information to anyone who receives services from the Washtenaw County Community Mental Health agency using Self-Determination arrangements. To learn more, a contact phone number and email is provided below:

This email contains some very important information for individuals and their families who are receiving community living support services (CLS) using a self - determination (SD) arrangement in Washtenaw County. Was your CLS budget reduced in May of 2015? Are you currently not receiving an adequate level of CLS services? Are you paying out of pocket for transportation, CLS services, community activity, or training expenses?

If yes, you are probably aware that in 2015, CMH changed the way in which they determine the self - determination budget. Instead of basing the SD budget on the individual's needs, they have essentially "capped" the SD budget and are forcing everyone to fit into a budget based solely on the number of CLS hours. CMH previously determined individual needs in the Person Centered Plan (PCP) and then authorized them in the Individual Plan of Service (IPOS.)

There is no longer "individualization". Instead the number of hours determine the budget, not the needs for transportation, training, or community activity. Although you may not feel a huge impact at the present, in the future if you or your loved one needed additional supports, such as double staffing due to an injury, there would be no additional funds or method to accommodate the need using self-determination. This method of calculating self- determination budgets is contrary to federal law and just plain wrong.

You do not have to accept this. If you did not file an appeal in May of 2015, you can still join other families in Washtenaw county who are fighting CMH to revert to the former, correct way of determining the SD budgets based on individual needs and medical necessity.

There is currently a lawsuit against Washtenaw CMH, not for monetary damages, but to force them to follow the law and perform the budgetary process correctly. This may greatly impact us and our loved ones in the future, You can join the lawsuit at no expense to you or your loved one.

For further information please call 734-665-7303 or email washtenawsd@icloud.com.


Thank you for taking the time to consider helping all the 150+ families in Washtenaw County who are affected by this.

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From The DD News Blog:

See also, Michigan Medical Necessity Criteria for Medicaid-funded services.  

Take note of the last paragraph: "A PIHP may not solely deny services based solely on present limits of the cost, amount, scope, and duration of services. Instead, determination of the need of services shall be conducted on an individualized basis."

The MI Dept. of Health and Human Services offers guidance on self-determination policy on this Website.

See also Self Determination Policy from 2012 from the MI Dept. of Community Health (now the MI DHHS).

Monday, December 19, 2016

News from ACCSES on Disability Policy and Closing Sheltered Workshops



ACCSES is an organization representing providers of disability employment services. Here are excerpts from their newsletter, The Weekly Windup:

November 18, 2016
PRESIDENT-ELECT TRUMP'S POSITIONS ON DISABILITY ISSUES

In September, the presidential candidates responded to questions posed by the American Association of People with Disabilities, the National Council on Independent Living, and the REV UP Campaign, as to the candidates’ positions on issues important to many in the disability community. Although ACCSES has previously circulated the questionnaire responses, we want to provide President-Elect Trump’s responses separately as they might be of greater interest now following the election. To read his answers to the questionnaire, click here.

December 8, 2016

MAINE IS BACK IN THE HOT SEAT

Maine has continually been held up by disability advocates fighting to limit a full array of employment opportunities and housing options for people with the most significant disabilities. Just this week, another scathing article was published on the growing waiting lists in Maine and the lack of funding. All while people with disabilities are denied jobs and housing options are shrinking. Click here to read the article published in the Portland Press Herald.


[See also, "Negative effects of Maine's Conversion from Sheltered Workshops to Integrated Employment", 6/23/15]

DISABILITY ADVOCATES HIT WITH THE REALITY OF THEIR ACTIONS

Many disability advocates have pushed policy makers to close center-based employment programs and to get rid of the special minimum wage. In Massachusetts, the state, with urging from advocates, closed its sheltered workshops "with the promise of expanding more inclusive employment and meaningful day opportunities for people with I/DD." Instead, Massachusetts cut funding, and with it the prospect of hoped-for jobs. (ACCSES notes that people with disabilities who are working may not wish to be placed in "meaningful day programs," any more than any other worker wants to be laid off.) In a guest column for a Massachusetts newspaper, Gary Blumenthal acknowledges that while Massachusetts' unemployment rate may be 3.3 percent overall, the unemployment rate for people with disabilities is over 70 percent. This result comports with the risk a recent report from the Congressional Joint Economic Committee warned about if Section 14(c) were to be eliminated. Keeping workers attached to the workforce can make a substantive difference in future success. Eliminating jobs without jobs to replace them only harms the people who want to work. ACCSES continues to advocate that people with disabilities have a right to choose where they want to work; our State and Federal governments must keep a full array of options available through common sense policies that protect the right to work.

Public comment needed on Medicaid waiver programs

This is an action alert notice from the Coalition for Community Choice (CCC):


PUBLIC COMMENT DEADLINE:

JANUARY 9, 2016 @ 5:00 PM EST

The Center for Medicare and Medicaid Services (CMS) is the federal entity in charge of funding and regulating all support services for adults with autism and other developmental disabilities. CMS is requesting public comment specifically on waiver programs across the country “to accelerate the provision of home and community-based services (HCBS) to Medicaid beneficiaries taking into account issues affecting beneficiary choice and control, program integrity, rate setting, quality infrastructure, and the home care workforce.” 

As individuals navigating and using this complex system, your voices are critical. This is an important opportunity to share information with those who control how the Medicaid system functions. CMS requests concise answers to the following questions: 

  • What are the additional reforms that CMS can take to accelerate the progress of access to HCBS and achieve an appropriate balance of HCBS and institutional services in the Medicaid long-term services and supports (LTSS) system to meet the needs and preferences of beneficiaries?
  • What actions can CMS take, independently or in partnership with states and stakeholders, to ensure quality of HCBS including beneficiary health and safety?
  • What program integrity safeguards should states have in place to ensure beneficiary safety and reduce fraud, waste, and abuse in HCBS?
  • What are specific steps CMS could take to strengthen the HCBS home care workforce, including establishing requirements, standards or procedures to ensure rates paid to home care providers are sufficient to attract enough providers to meet service needs of beneficiaries and that wages supported by those rates are sufficient to attract enough qualified home care workers?
To see further questions posed by CMS within the broader questions above, review this section of the document.

HOW TO SUBMIT YOUR COMMENT
: Send your comments electronically (click here) or mail them to this address:

Centers for Medicare and Medicaid Services, Department of Health and Human Services, Attention: CMS-2404-NC
P.O. Box 8013
Baltimore, MD 21244-8013

IMPORTANT NOTE: You do not have to answer every question above. Do not spend more than a paragraph describing yourself or your loved one with a disability. Instead, focus on system barriers you have encountered and changes that can improve access to services. Please be aware that all submissions will be publicly available to read. CMS will not answer questions raised during this public comment period but may reach out for clarification of your comment in the future. Directions on how to submit one’s public comment as well as additional information on this request for information can be found here.


Saturday, December 3, 2016

December 2016: Post Election Update from the Coalition for Community Choice

The latest news from the Coalition for Community Choice: 
  • HCBS Compliance conference call, December 12th or 14th, 2016
  • Disability Housing: What's Happening? What's Challenging? What's Needed?
  • Illinois: Suffering in Secret
  • Self Advocate Supports Intentional Communities on Youtube
  • Plus more on HCBS policy, CMS, Employment, etc.




Tuesday, November 29, 2016

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.