By Maria Shriver

This has been a year filled with teachable political moments. Racism, sexism, ageism and “change” have been debated at kitchen tables and water coolers across America. But this last week, those gathered around my kitchen table have been consumed with another discussion, one that is not Democratic or Republican — it’s the “R-word” debate.

The “R-word” stands for “retard.” For the 6 million to 8 million Americans with intellectual disabilities and their families, this word and its hurtful use is equal to the impact of the “N-word” on an African American.

The reason it’s kitchen-table fodder is because of the Dreamworks film “Tropic Thunder,” which topped the box-office charts when it opened last weekend and which will attract many more moviegoers this weekend. In the R-rated film, which I’ve seen, a character named Simple Jack is a caricature of a person with a developmental disability. In one of the scenes, the character played by Robert Downey Jr. chastises Ben Stiller’s character for “going full retard,” and the “R-word” is repeated many times.

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Katherine J. Inge of the Virginia Commonwealth University has recently published a paper about supported and customized employment. The report cites a survey given to employees in community rehabilitation programs says that about 70% of the employees in these programs choose to stay. The report then asks the question “Why?”

Is it because the person is afraid of moving into community based employment programs, fear of losing friends, fear of the unknown? The report is aimed at educating those fearing moving from CRP to integrated community settings. The report also details a man named John whose passions and interests were discussed and he was placed in community employment at minimum wage rather than staying in a CRP making subminimum wage.

Choice and customized employment: A critical component

AB 851 Update From the World Institute on Disability (bill Sponsor) and Commentary From Eli Gelardin, GAPS Task Force Co-Chair

From the summary below:

“At this point, the budget mess is our state government operating by organized, orchestrated inertia. Nothing gets to improve – even when so many state advisory committees, stakeholder groups and government programs agree that we need these changes to improve employment outcomes,” stated Eli Gelardin, GAPs Co-Chair and Executive Director, Marin Center for Independent Living, reacting to the August 7 defeat of AB 851.

“People who cannot save their money are always at risk of living in poverty,” he continued. “If you can’t save the money your earned, the rainy day we all get can ruin our chances of living and thriving independently, because we have nothing in the bank to tide us over. One of the great things about AB 851 is that it fixes this problem, at least for workers. That’s a start. We need significant change in our State’s budget process very soon!“

“We are again deeply grateful to Assemblywoman Julia Brownley who has been the leader for this public policy in AB 1113 (2007), and now in AB 851. We will not go quietly into the night; we will be back …,” he added.

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Assembly Health Committee will hear 1 bill on August 18th:

• SB 541 On Increasing Penalties for Clinics, Health Facilities, Home Health Agencies and Hospices

SENATE HEALTH COMMITTEE WILL HEAR 3 BILLS AUG 20TH

• SB 483 Medi-Cal Eligibility “Deficit Reduction Act”
• SB 434 Medi-Cal Long Term Care Rates
• SB 1518 Multipurpose Senior Services Program

SACRAMENTO (CDCAN) - Four bills including two important bills dealing with Medi-Cal, will be heard next week in what is likely to be the final scheduled Assembly and Senate Health Committee hearings for the 2008 Legislative session. All four bills received special permission in each house to be heard in committee, even though the deadlines to hear and report bills has passed.

Meanwhile, the State is now Day 45 without a State Budget with no agreement or deal near.

Assembly is scheduled to convene Friday morning for floor session to act on bills. The Assembly may meet on Sunday for a vote on the State Budget. There is no agreement on the budget between Democrats and Republicans however, and the vote on the budget is all but certain to fail.

The State Senate adjourned Thursday and is scheduled to reconvene on Monday, August 18, the exact time upon the call of the Senate President Pro Tem. The State Senate could meet on Sunday for a vote on the State Budget - though that is upon call of the Senate President Pro Tem. Like in the Assembly, without a budget agreement between Democrats and Republicans, a Senate floor vote on the budget is certain to fail.

Two Important Medi-Cal Bills Set For Hearing August 20th

• SB 434 by Senator Gloria Romero (Democrat - Los Angeles), deals with Medi-Cal long term care rates under a “quality assurance fee” program and the establishment of a stakeholder group to review the program and report back to the Legislature next year. The bill requires the Department of Health Care Services to establish a stakeholder workgroup to ensure compliance with the intent of the Medi-Cal Long Term Care Reimbursement Act, originally enacted by the passage of AB 1629 by then Assemblymember Dario Frommer (Democrat - Los Angeles) four years ago. The program had an ending date (sunset) of July 1, 2008 and budget related bill language extended the program. This bill would make additional requirements to State law regarding the makeup and responsibilities of the stakeholder workgroup.

  The bill, which passed the Assembly August 13th, represents general agreement among various disability, senior advocacy groups and also groups representing health facilities and labor.

• SB 483, by Senator Sheila Kuehl (Democrat - Santa Monica), that would make important new changes to eligibility for Medi-Cal long term care services, including home and community-based services, as required by the federal “Deficit Reduction Act of 2005″. The bill passed the Assembly on Monday (August 11) on a party-line vote, with major amendments made in the Assembly.

AUGUST 18, 2008
ASSEMBLY HEALTH COMMITTEE
Time: Upon call of the committee chair
State Capitol - Room 4202

• SB 541 (Alquist) Clinics, Health Facilities, Home Health Agencies and Hospices: Administrative Penalties & Patient Information

AUGUST 20, 2008
SENATE HEALTH COMMITTEE
Time: Upon call of the committee chair
State Capitol - Room 4203

• SB 434 (Romero) Medi-Cal: Long Term Care Reimbursement Rates (Stakeholder Group)
• SB 483 (Kuehl) Medi-Cal Eligibility (Deficit Reduction Act of 2005 Implementation)
• SB 1518 (Correa) Multipurpose Senior Services Program (MSSP) Sites: Competitive Bidding Requirements

The California State Council on Developmental Disabilities recently put out by a legislative update for the bills sponsored by the Council throughout the 2008 session.

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We’ve recently received new fliers for meetings connecting parents of children with autism spectrum disorder to one another for support group meetings. These meetings are geared toward parents helping parents through certain situations and getting and receiving advice during certain situations. The director of the Redwood Coast Regional Center Autism Spectrum Disorder unit will also be available for questions and advice.

Parents around Ukiah and Fort Bragg are urged to attend one of these meetings as they can be very meaningful and one can obtain a lot of insightful information.

Parent to Parent Meetings - Ukiah - September to December

Parent to Parent Meeting - Fort Bragg - August

While no actual budget deal or floor votes on the State budget have been announced, there are rumors and reports that the Legislature is considering agreeing to the Governor’s proposals that call for cutting the federal cost of living money due January 1, 2009 for people receiving SSI/SSP (Supplemental Security Income/State Supplemental Payment) or other cuts to that program.

There are rumors and reports of other major cuts to health and human services being considered that impact hundreds of thousands of children and adults with disabilities (including developmental), mental health needs, seniors, low income families.

Urge continuation of the Medi-Cal Working Disabled Program and restoration of Medi-Cal provider rate cuts.

A budget for California need not harm its own people to balance it. We are one community - let’s stand and act like one with unified action opposing further cuts that harm all of California.

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In August 2007, CMS announced a new policy that they would stop reimbursing for certain hospital acquired conditions. The eight conditions included:

• Falls
• Mediastinitis; an infection that can develop after heart surgery
• Urinary Tract Infections that result from improper use of catheters
• Pressure Ulcers
• Vascular Infections that result from improper use of catheters
• Objects left in the body during surgery
• Air Embolisms
• Blood Incompatibility

On July 31, CMS appended three additional conditions bringing the total to 11. The new conditions are:

• Blood clots in the leg after knee or hip-replacement surgery
• Complications related to inadequate control of blood-sugar levels
• Infections that develop on surgical sites after elective procedures

All of the previous go into effect on October 1, 2008.

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The AAPD is once again recognizing those with outstanding leadership, advocacy, and dedication to and for the disability community at large. Three individuals, who are emerging as leaders in the cross-disability civil rights movement, will receive $10,000 to help them continue their progress as leaders and further connect their work with the national grassroots of AAPD. The recipients of the 2009 Hearne Leadership Awards will also have an opportunity to meet with national disability leaders at the AAPD Leadership Gala in Washington D.C. in March 2009.

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Disaboom (OTCBB: DSBO; www.disaboom.com), the premiere online community for people touched by disability, today announced a new partnership with worldwide hotel chain, Microtel Inns & Suites. The hotel brand, which features accessible rooms, employees trained in disability etiquette in each of its locations, and special amenities for travelers with disabilities, will display banner advertising on disaboom.com, offering people with disabilities an accessible accommodation alternative for their travel needs.

“People with disabilities have to consider accessibility when planning vacations, business trips and other travel,” said Dr. Glen House, founder of Disaboom. “Disaboom offers our users all the tools they need to travel successfully and comfortably, including articles written by travel experts, and blogs and bulletin boards where community members can share experiences. Microtel’s presence on the site complements these resources by offering our members a comfortable travel alternative with a company dedicated to accessibility.”

Microtel has established standard prototypical designs in its hotels, going beyond ADA-compliance guidelines to ensure that all hotels feature 25% more designated rooms than required for guests with disabilities. The hotel chain also offers Opening Doors® training for disability etiquette to staff at each of its hotels. The Opening Doors program teaches hospitality employees how to be friendly and helpful to travelers with disabilities and special needs and also offers practical service skills such as customer relations, operational procedures, emergency and safety considerations, and an awareness of “people first” terminology. In addition, each hotel features “Access Microtel” accessibility guides, “Accessible Fitness” bags and Upper Body Ergometers for guests with special needs.

Disaboom and Microtel Inns & Suites Partner to Provide Accessible Travel Options for People with Disabilities

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