This month long event across the country is an opportunity for VOR members and others to work to together to EDUCATE the general public about VOR's good and necessary advocacy work, and an opportunity RECRUIT more people to support VOR with memberships and contributions.  (A few examples of how you can help are listed below).

Background

During the last 27 years VOR has accomplished many things due to the support our loyal members and donors.

We are proud and excited about what we have been able to accomplish over the past two decades. Please take a minute to look at the VOR Recent Milestones and the Value of VOR Membership attachments, which include Member Benefits, recent and historic Milestones, and an overview of VOR activities.

We need your help now to let others know about VOR’s important work.

With VOR’s 2010 Awareness campaign we are calling on ALL VOR members to EDUCATE existing donors and RECRUIT as many new members as possible.

We need the help of all of you to get the word out and make October 2010 a really special time for VOR Awareness.

How you can help

We are calling on each of you to work with your Family Groups, Facilities, and others to increase the awareness and visibility of VOR!! There are lots of ways to help:

• Include an announcement or story about VOR Awareness Month (October 2010) in your newsletter and other publications.
• Host an event that encourages membership and involvement in VOR. This can be in your home, at your church, in conjunction with a family association meeting, or other venue.
• Send a letter or an email blast to your family association members and others about VOR, encouraging them to join and donate to VOR.
• Host an event such as a walkathon, bake sale, garage sale, Tupperware party (with a portion of the sale proceeds going to VOR).

These are just a few ideas. You may have some great ideas too. As you prepare for events or activities please let VOR know what great plans you have in place and also how it turned out so we can share success stories. We would like very much to include your story and pictures of activities in our newsletter and on our website.

The time is now!

Like many other organizations, this is a difficult time for VOR. Regardless, our Mission is too critical; we will not falter. With your help, VOR will continue to successfully pursue our mission as the only national organization that expressly opposes efforts to eliminate the facility option, recognizing that the individual and their family are the primary decision-makers.

Thank you in advance for your participation! We are here to help. Contact Julie Huso at jhuso@vor.net or Tamie Hopp at thopp@vor.net for questions, handouts for your events, story ideas for your newsletters, or whatever you may need to make your event on VOR’s behalf successful. VOR’s Membership Committee is also standing by to answer any questions. Their contact information follows.

Thank you again. Now, go EDUCATE and RECRUIT in October 2010!

Sincerely,

This month long event across the country is an opportunity for VOR members and others to work to together to EDUCATE the general public about VOR's good and necessary advocacy work, and an opportunity RECRUIT more people to support VOR with memberships and contributions.  (A few examples of how you can help are listed below).

Background

During the last 27 years VOR has accomplished many things due to the support our loyal members and donors.

We are proud and excited about what we have been able to accomplish over the past two decades. Please take a minute to look at the VOR Recent Milestones and the Value of VOR Membership attachments, which include Member Benefits, recent and historic Milestones, and an overview of VOR activities.

We need your help now to let others know about VOR’s important work.

With VOR’s 2010 Awareness campaign we are calling on ALL VOR members to EDUCATE existing donors and RECRUIT as many new members as possible.

We need the help of all of you to get the word out and make October 2010 a really special time for VOR Awareness.

How you can help

We are calling on each of you to work with your Family Groups, Facilities, and others to increase the awareness and visibility of VOR!! There are lots of ways to help:

• Include an announcement or story about VOR Awareness Month (October 2010) in your newsletter and other publications.
• Host an event that encourages membership and involvement in VOR. This can be in your home, at your church, in conjunction with a family association meeting, or other venue.
• Send a letter or an email blast to your family association members and others about VOR, encouraging them to join and donate to VOR.
• Host an event such as a walkathon, bake sale, garage sale, Tupperware party (with a portion of the sale proceeds going to VOR).

These are just a few ideas. You may have some great ideas too. As you prepare for events or activities please let VOR know what great plans you have in place and also how it turned out so we can share success stories. We would like very much to include your story and pictures of activities in our newsletter and on our website.

The time is now!

Like many other organizations, this is a difficult time for VOR. Regardless, our Mission is too critical; we will not falter. With your help, VOR will continue to successfully pursue our mission as the only national organization that expressly opposes efforts to eliminate the facility option, recognizing that the individual and their family are the primary decision-makers.

Thank you in advance for your participation! We are here to help. Contact Julie Huso at jhuso@vor.net or Tamie Hopp at thopp@vor.net for questions, handouts for your events, story ideas for your newsletters, or whatever you may need to make your event on VOR’s behalf successful. VOR’s Membership Committee is also standing by to answer any questions. Their contact information follows.

Thank you again. Now, go EDUCATE and RECRUIT in October 2010!

Sincerely,

The Importance of Guardianship

Parent Association for the Retarded of Texas (PART) Newsletter
“No better ADVOCATE than the parent or family”
June 2010

Once a person turns 18, his/her parents are no longer considered the natural guardian.  This is true even if the individual has a disability such as mental retardation.  Parents no longer have the legal authority to make decisions for the adult with a disability unless they are appointed their child's guardian by a judge.  This means that the law presumes that the person with a disability can make all of his/her own decisions.

What is Guardianship?

Guardianship is a legal process whereby someone is given the authority by the court to make decisions regarding major life decisions such as medical care, living arrangements, and sometimes financial management and act on behalf of a person who lacks the ability to comprehend and do those things for him/herself.  The process is designed to protect an individual who cannot make decisions for himself/herself from being exploited, abused or neglected.

Do all persons need a guardian?

No.  Just because a person is mentally or physically disabled does not mean that he/she must have a guardian.  A good question to ask is -- can he/she manage his/her personal affairs by making decisions regarding money, understand and sign consents for medical treatment or medications, etc.

Who appoints Guardians?

Only a judge can appoint a guardian.

What does a Guardian do?

Guardians make significant decisions for the individual, called a "ward" by the court.  The decisions could include medical consents and consents for medical procedures.  The guardian provides necessary legal consent for psychotropic medications, special programs, athletic events (Special Olympics), participation in educational and financial decisions and access to confidential records and reports.  The guardian also has authority to speak for their ward in selecting appropriate living arrangements.  Essentially, the guardian does the same sorts of things that a parent does for a child.

A guardian is expected to visit and call to check on their ward and his/her care frequently.  The guardian is required to renew their "Letters of Guardianship" annually, by turning in a report to the court describing how their ward did during the previous year.

Are there different types of guardianships?

Yes.  A "guardian of the person" gives the guardian authority to make decisions about the ward's personal affairs.  If the ward owns property or inherits property or an estate, the ward would also need a "guardian of the estate".  In most cases only a guardian of the person is needed.

Are there any things that a Guardian cannot do for his/her Ward?

Yes.  The guardian cannot vote for the individual, cannot consent to sterilization, cannot voluntarily admit the ward for long term care nor interfere with marriage decisions.

Will I become responsible to cover all of my ward's cost of care if I become a guardian?

No, you are only responsible for making appropriate decisions for your ward as needed.

How do I become the guardian of my family member with mental retardation?

You may work through an attorney and make a request in the form of a petition (application) for your appointment to an appropriate Judge.  The petition or application must include documentation of a thorough examination performed by a physician or psychologist that explains why the individual in incapacitated.  Also the application should be filed in the county of residence of the individual who needs the guardian.

How much will it cost?

The cost can vary depending on the circumstance such as if there is an estate.

How can I pay for it?

If you do not have the money to pay the cost in full, ask the attorney if you can pay out the cost on a payment plan.  Trust fund money can be used to defray the expense of seeking and maintaining guardianship.

Awareness and Outreach: Family-to-family advocacy, publications, media outreach, disability policy forums, and conferences help promote VOR's experienced perspective to affected families, policymakers and the general public. Click here to learn more about VOR's Family Advocacy and Reaching the Media programs.

Legislative and Government Affairs Program: Leveraging the power of its grassroots membership, VOR coordinates regular communciation with federal officials on issues of critical importance, including an annual Washington Initiative, where volunteer participants hand-deliver VOR's positions to Congressional offices and federal officials. Click here to learn more VOR's Legislative and Government Affairs Program.

Legal Advocacy Program: VOR’s Choices for a Lifetime, Options for All legal advocacy program minimizes the injustice of excluding families by defending choice and empowering families in the legal system. Click here to learn more VOR's Legal Advocacy Program.

Member Benefits: Click here to learn more about VOR Member Benefits and click here to Join!

VOR Milestones, 1983 - current: View our many accomplishments!

ARKANSAS
By Alan Fortney, State Coordinator

DOJ filed a lawsuit against the Conway Development Center in Jan. 2009 after 6 years of investigation/negotiations. Arkansas is represented by attorney Tom York, and Robin Sims is an expert witness for the state. In May 2010, DOJ filed a separate lawsuit against all 6 development centers in Arkansas claiming the state is out of compliance with the ADA. The Arkansas P&A, like other states, have used our case as a “rallying cry.”   On May 18, 2010, Gov. Mike Beebe announced his intention to close the Alexander HDC due to losing Medicaid funding for being out of compliance with CMS, but has vowed to support the other five centers.

CALIFORNIA

Brian Boxall, Board Member (N. CA): Agnews, a state ICFs/MR, was closed after 7 years (2003-2009). The process was well-funded and private service providers were allowed to contract with the state to hire 200 Agnews staff members (allowing staff to retain their state salaries and benefits). Some former residents were transferred to a new medical model home - “962 homes” – developed in preparation of Agnews’ closure.  962 homes are operated with specific nursing standards. The home is owned by a non-profit housing trust which is supervised by the state.  Hearings were held to glean lessons learned from the Agnews closure.

Terry DeBell, President of CASHPCR (S. CA): The state’s budget deficit of over $20 billion has presented great challenges. Community services are being cut and Developmental Center (DC) staff have faced mandatory furlough days.  There is also a proposal to close Lanterman DC, due to both financial and ideological reasons. The closure must be approved by the legislature. If passed, some residents will transfer to a nearby DC; most will transfer to the community. The development of special medical model homes with augmented staff and services and using Lanterman as an outpatient clinic is proposed. 

Lex Wells (S. CA):  California has 21 Regional Centers that coordinate care for eligible citizens. The budget crisis is hurting community providers. Cuts include dental and some providers are simply unwilling to accept individuals with challenging needs (including former DC residents) because of the affordability. The DCs are the only safety net the state has for the most severely and profoundly mentally retarded and challenged individuals.

Kathleen Miller / Molly Dillon (N. CA):  Some former Agnews residents who were not eligible for 962 homes sought placement at Sonoma Developmental Center (DC) in northern California. Many clients with behavioral challenges have no community alternatives. A state bill, which did not pass, aimed to address this by allowing these individuals to access psychiatric care at Sonoma DC as out-patients. Without the DC as an option, these individuals with MR/DD are at risk of placement in mental health facilities, jail, or even hotel rooms.  There also remain aggressive efforts by some Regional Centers to move DC residents with medical needs into community homes, especially in cases where there is not an involved family.

FLORIDA
By Ed Carraway, Florida State Coordinator; and Jack Kosik, Exec. Dir. of Noah’s Ark/Central FL

Jack Kosik reported that just days prior to VOR’s Annual Conference a bill to support planned residential communities for people with DD and their families passed the Florida Legislature.  Previously, the development of campus-style residential communities were not allowed because Florida law prevented the development of supported living homes within 1,000 feet of each other.  Ed Carraway reported that family advocates had also successfully addressed funding challenges associated with providing dental and respite care at developmental centers to non-residents, however promoting the service to eligible individuals and overcoming built-in biases remained a challenge. In other states, a brochure featuring services mailed directly to group homes, helped promote the service.

GEORGIA
By Ann Knighton, VOR Board Member and State Coordinator

The Gracewood ICF/MR Family Council meets quarterly and hosts a family picnic every October. In 2009, Julie Huso represented VOR by speaking on issues that are of concern to families like the urgency of keeping the ICFs/MR intact.  Efforts continue to organize a statewide family council. Also in October 2009, the Medical College of Georgia took over operation of Gracewood ICFs/MR.  This year, the Family Council attended the annual meeting of the Georgia Legislative Black Caucus and raised questions about the Governor’s 2008 decision to close all state ICFs/MR.  Ann Knighton filed a complaint with the HHS Office of Civil Rights to protest the Governor’s decision which was made without any family input. This complaint, filed in 2009, is still pending.

ILLINOIS
By Caroline Walsworth

The state is in a serious financial crisis. Governor Quinn and the DHS budget has been cut by $125 million, including the community and ICF/MR budget. The Ligas v Maran lawsuit, filed by P&A to close all private ICF/MR, continues.

IOWA
By Sybil Finken, VOR First VP and State Coordinator

The 2 state centers, Woodward (WRC) and Glenwood (GRC), recently hired new Directors. Families are optimistic about the new leadership. Since 2008, the number of residents at WRC has decreased by 9.3%, but staff has increased by 1.1%. At GRC, the number of residents has decreased by 6.3%, and staff has increased by 1.6%. Both WRC and GRC have off campus programs which provide HCBS waiver, respite, and training and consultation to allow people to remain in their homes in the community. WRC also has an Autism Resource Team that provides training statewide. Each center also has onsite services by community entities, including their public school districts. At GRC, other nonprofits share space on campus, including hospice groups, county offices, Alegent Health, and Kids Place.  In past years, DOJ has investigated WRC and GRC, but ultimately found both to be incompliance with all measures.

KENTUCKY
By Elbirda Haley, VOR Secretary

 Hazelwood ICF/MR, one of three state facilities, will be reducing the number of long term beds for residents in the next few years, but will continue to offer short-term crisis admissions and temporary residential services for individuals with multiple complex medical care needs. A specialized unit for individuals with Down Syndrome and Alzheimer’s dementia has been added.  There is a groundbreaking in July for a project to build six additional 4 bed mini ICFs/MR on the Hazelwood campus for residents of another state facility in Louisville. Hazelwood is planning to offer outpatient services to individuals living in the community at a specialty wheelchair clinic and neurology clinic. To assist with this reorganization, there are now transition meetings for residents, and once each month families have the opportunity to meet with providers to explore services other than Hazelwood.

LOUISIANA
By Mary Kay Cowen, VOR Board Member

As of April 30, 2010, nearly all state run group homes have been privatized. The remaining 4 will be privatized when providers are located. A budget proposal will reduce by half the six state ICFs/MR by privatizing one and consolidating two.  All facilities will also be downsized by 20% by using a new assessment process (SIS/LA Plus). Although the state has pledged its support for ICFs/MR as part of the continuum of care, it seems intent on privatization and downsizing.

MICHIGAN
By Jill Barker, VOR Board Member and State Coordinator

Michigan’s budget troubles threaten devastating cuts to the Community Mental Health (CMH) system that serves people with mental illness, substance abuse and DD. Because of this dire situation, there is some support for expanding Medicaid to secure greater federal funds and create jobs. Mount Pleasant Center, a state ICF/MR closed in September 2009, due to pressure from the Arc, P&A and others. Outcomes from this closure are mixed. Some families like having their family member closer, but at least two former residents have died in the last year, some now reside in Caro Psychiatric Hospital, and some have little to do each day. One local CMH board member testified that two former MPC residents are costing them $750,000 per year each and it is not yet known that even at this cost that the setting is appropriate. One provider from another county called the police more than 50 times in one month. Despite these human and financial costs, some state policymakers and advocates continue to push for a state “Vision Statement” that holds that any group setting for persons with DD (e.g., group homes or day programs) is segregating and discriminatory.  In response, there is a push for a “Choice Resolution” as part of the Vision, which would recognize the right of individuals to choose from an array of services according to needs and preferences.

MISSOURI
By Mary Vitale, BHC Family Association

The Bellefontaine Habilitation Center (BHC) retained $18,000,000 for renovation, including construction of additional homes on campus. In March, the DOJ reviewed the areas of safety, active treatment, behavior support plans, and transition plans at BHC. In April, BHC passed its federal ICF/MR survey with only a few minor infractions. Recently, families successfully challenged the proposed closures of Nevada and SEMORS Hab Centers. Conversion to waiver homes is a statewide plan that families strongly oppose. The plan is supported by private providers, P&A, DD Council, and others are who working hard to eliminate the ICF/MR option in Missouri. With the current economic difficulties, the promise of saving money by converting ICFs/MR to waiver homes is appealing to legislators. Saving money, not providing services, seems to be the current priority.

NEW JERSEY
Cindy Bartman, State Coordinator; and Joanne St. Amand

New Jersey has 7 ICFs/MR. A state bill (Greenwald) calls for total closure and is motivate by false state claims that 2,400 people want to leave the state centers. Families debunked the myth that nearly all residents want to leave their homes by surveying all legal guardians of all but one center and simply asking these families if they 1) would prefer a community alternative; or 2) prefer the center. 96% of all respondent preferred the center and opposed transition to the community.  Families have actively promoted these findings: In February they held a press conference, in March they met with the new Governor, in April they arranged for legislative tours of a center, and in May they helped coordinate a rally at the State Capitol.  Families, led by Robin Sims, also successfully challenged policies which required individual planning documents be written in first person, which were misleading with regard to individual abilities and choices.

NEW YORK
By Hugo and Cristy Dwyer, NY State Coordinators

The Dwyers are VOR’s new New York State Coordinators.  They are working to learn more about NY’s system of care, including its ICFs/MR.  The NY Office of MR/DD operates 13 DD Services Offices (DDSOs) responsible for providing programs in one or more counties.  One resource indicates that there are 7,752 people being served in public and private ICFs/MR with nearly 60% being served in homes with 1-15 people.  

TEXAS
By Sandra Reeves, VOR Board Member

Texas still has 13 state ICFs/MR. A DOJ settlement is requiring some center improvements, including better professional staffing (e.g., nurses, physicians, pharmacists) and guardians for every resident. DOJ is preparing baseline evaluations to assess progress, a process that included a teleconference between families, the state and DOJ.  Meeting the requirement that each resident have a guardian has proven to be a challenge. Currently only about 50% of all center residents have guardians.

WASHINGTON STATE
By Terri Anderson, State Coordinator
 
Once again, families, guardians, caregiver staff and some community advocates defeated proposals to close two of Washington’s five Residential Habilitation Centers (RHCs). Budget woes were the driving factor in the closure proposals and next year’s budget is expected to be worse.  Advocates in support of a complete system of care are working on a “See With Your Own Eyes” campaign and are asking all legislators and candidates to tour the RHCs and see the type of supports being offered and how they can be resources for residents and their community counterparts. Family advocates have been promoting the Community Resource Center model for years, but feel finally that some legislators are listening. Every RHC resident is now undergoing a state assessment. An independent consultant will review these assessments to determine community appropriateness and capacity for residents who indicate an interest.

WISCONSIN
By Rebecca Underwood, Co-State Coordinator; and Cathy Horneberger, AFSCME SEHCC

Wisconsin has 2 state ICFs/MR for long-term care, and another for short term placements. There are also 11 county and private ICFs/MR. Recently, 20 private ICFs/MR closed due to lack of adequate payment by the state. In response to being “financially strangled,” private and county ICFs/MR sought an “ICF/MR Preservation Study.” This effort included families, providers and advocacy groups (e.g., People First and P&A).  After this study even P&A felt that there were not adequate services to move all people out of ICFs/MR. The State, however, persists, even providing incentive fees to ICF/MR providers who move people out.  Oversight of small Adult Family Homes has transitioned from the counties to the State. The union (AFSCME) has been monitoring this transition and working with the state on standards which better address the health care needs of Adult Family Home residents.

Gail Bowen, along with Michael’s father and co-conservator (James), will be the first to agree that their legal struggles, which began following a 2007 Interdisciplinary Team (IDT) meeting for Michael, were unnecessary and unjustified.

Because Agnews, which had been Michael’s home since 1986, was closing, Gail sought a transfer to Sonoma. All members of Michael’s IDT agreed except one: The San Andreas Regional Center (SARC), a state contracted agency charged with developing individual program plans for California citizens with developmental disabilities who are in need of services.  SARC’s refusal blocked Michael’s admission to Sonoma, forcing his family to request a Fair Hearing before an administrative judge to appeal SARC’s decision.

In December 2008, Administrative Law Judge (ALJ) Karen Brandt found in favor of the family’s request that Michael be transferred to Sonoma, noting that “it was evident Michael’s family was motivated by their love and devotion to him . . . [and] given his very severe and significant developmental disabilities and medical issues, a developmental center is the least restrictive and best environment for him. The determination of what is the least restrictive environment must be based upon factors that are specific to Michael’s individual needs.”

The public defender challenged this decision in court in January 2009 – a filing the appellate court described as “ostensibly on behalf of Michael but effectively on behalf of SARC.” Still, the trial court sided with the public defender and against the family’s wishes, holding that Sonoma was not the least restrictive environment for Michael.

Gail Bowen appealed and won. Although the appellate court’s decision hinges on a technicality that restores the ALJ’s decision in support of Michael’s placement at Sonoma, it is not a hollow victory. In its decision, the appellate court also provides important guidance for other families seeking to protect developmental center placements. The due process requirements for an initial admission to any developmental center (called Hop hearings in California) are not meant to be replayed over and over again to justify continued admission or transfers to another developmental center. 

“The due process concerns for retention in a developmental center are not the same due process concerns that are present when a developmentally disabled person is first involuntarily committed.”

The question before the federal district court in Tennessee was whether the Americans with Disabilities Act (ADA) precluded Clover Bottom residents, or their legal guardians, from choosing “congregate care.”  The U.S. Department of Justice and People First of Tennessee argued against the right of choice when professionals have deemed another setting to be more “integrated.”

Citing Olmstead and Medicaid law, the Court ruled in favor of the state and families, recognizing the freedom to choose a large ICFs/MR placement even if the individual could be appropriately served in a more integrated setting. 

“The intersection of citizen choice and the ADA was addressed by the Supreme Court in Olmstead v. L.C.,” wrote the court.  “[T]here is no federal requirement under the ADA that community-based treatment must be imposed on citizens who do not desire it.”  

Click here for the decision and order.

Seven years ago, Randi Davenport's son fell apart. Just as he turned 15, about the time most kids are learning to drive, Chase tried to strangle himself with a cord. He was convinced that people he called "the nailers" were coming to kill him. He went crazy.

In her new memoir, "The Boy Who Loved Tornadoes," Randi Davenport of Chapel Hill recounts her battle to save her son, Chase, as he descends into psychosis. Along the way, she delivers an indictment of mental health care in North Carolina and across the nation.

Davenport did not set out to write this book.

One day in 2004, she says, as she was "raging about mental health reform in North Carolina," a friend suggested that she submit an essay to a local newspaper. After a week of writing, she had 100 pages. "Then I started to cry, because I knew what it was. And I wondered if I had the strength and courage to go forward."

The result, "The Boy Who Loved Tornadoes" (Algonquin; $23.95), is a story of a mother's fierce love and a portrait of a system that fails some of its most mentally ill citizens.

One man and one Developmental Center saved Chase's life.

To read the article, click here.

My academic and social skills improved about the time that I was ready for high school and I was mainstreamed for most of the day.  I became more independent when I learned to use public transportation and began to expand my social circle.  Eventually, I earned a BA in social work.  I have also learned from a number of friends including a Sunday school teacher and a ministry team. 

Since 1979 I have been involved, in various capacities, of working with adults with mental retardation.  Most of my involvement has been in the Christian community, however I have sought to study and understand both what has been done historically and what is being done currently to serve these persons in the human services sector.  One of my major concerns about where I see services going for people with mental retardation is that while there is much talk about giving them choices in reality we are ignoring what they really want. 

To read more and see Rick's full essay, click here.

Some DD Act programs pursue activities which violate Congressional intent, including activities which:

1. Disregard family input, in violation of the Act's requirement that individuals and families be the "Primary Decisionmakers" through litigation, legislative advocacy, and organizational priorities;

2. Facility closure activities (ICFs/MR deinstitutionalization); and

3. Activities which discriminate against people with severe and profound mental retardation and developmental disabilities, and the impact of these activities on these people.

A report of DD Act abuses covering many states is available here.

State Specific reports are available as follows:

It is difficult to believe that a father with a 28-year record of active advocacy for the choice of facility-based care and adamant objection to community placement for his daughter with profound/severe intellectual disabilities would voluntarily remove his daughter with cerebral palsy from a state run facility where he was president of the parents’ association and place her in a community home.

Yet, Bill Haas, the former chair of VOR’s State Coordinator Committee and principal author of the VOR manual detailing how to effectively challenge forced community placement has in fact done just that.

The desire to find a permanent alternative to a state run facility that would permit his family to direct and control his daughter's care brought Bill Haas to consider the Microboard program. Like many community homes for people with mental retardation or developmental disabilities, the Microboard is paid with Medicaid dollars.

To read more about the Microboard model and how it is working for his daughter, Bridget, click here.

For more information, visit VOR's Legislative Page.