Patti's Blog - Advocate for Elders, People with Disabilities and Their Families

Spread the Word to End the Word

It is time to "Spread the Word to End the Word," and on Tuesday, 31 March, events throughout the United States and around the world will make people stop and think about their hurtful and disparaging use of the word "retard."
 
Most people don't think of this word as hate speech, but that's exactly what it feels like to millions of people with intellectual disabilities, their families and friends. Using "retard" as a term of derision is just as cruel and offensive as any other slur.

The "R" word is no joke. Its usage is associated with a history of institutionalization, genocide, forced sterilization, segregation, and being regarded as "less than human." Additionally, more than any other group, people with intellectual disabilities continue to experience record unemployment, significant physical, mental and sexual abuse, and limited rights.

The "R'" word was born of oppression -- not until 1975, with the passage of P.L. 94-142 were people with intellectual disabilities -- ID -- even allowed to receive a public education.

For many years, people with ID lived as slaves in large, state and privately run institutions where they were made to work, without compensation, at tasks such as farming, gardening, cooking, cleaning and "taking care of'" other residents who could not care for themselves.

While the Ku Klux Klan may not have specifically targeted people with ID, people with ID were the victims of the Eugenics Movement, which permeated society, scientific establishments and state and federal government.

Between 1907 and 1963, more than 64,000 people with disabilities were forcibly sterilized under the auspices of eugenic legislation in the United States. The Nazi architects of the "final solution'' honed their skills by practicing first on people with disabilities.

While the word "kidnapping" may not apply, countless numbers of people with ID were taken away from their families and communities and admitted to large public institutions. These institutions could rightfully be described as state-sanctioned ghettos.

People with ID continue to be the victims of violence. Current data on abuse and neglect of people with ID highlights the seriousness of this issue.

This, in a nutshell, is the reason that people take offense at the use of the "R" word.

Rod Patterson, Pontiac
(Published on Pantagraph.com)

Spread the Word to End the Word will raise the consciousness of society about the dehumanizing and hurtful effects of the R-word and encourage people to pledge to stop using it.  America will be asked to declare their support for more respectful and inclusive language, specifically that referring to those with intellectual disabilities.

What can you do?

· Stop using the r word

· Tell others why they shouldn't use the r word

· Go to http://www.r-word.org/  and take the pledge to stop using the r word and learn more about the events on March 31st

· Tell your friends to take the pledge

For more info, see related article on SpecialOlympics.org

Representatives Murphy and Biggert Reintroduce Section 811 Reform

Representatives Christopher Murphy (D-CT) and Judy Biggert (R-IL) have reintroduced the Frank Melville Supportive Housing Investment Act (H.R. 5772).   The bill, which passed the House last year but never found traction in the Senate, would reform the Department of Housing and Urban Development’s (HUD’s) Section 811 Supportive Housing Program for Persons with Disabilities. Section 811 provides housing for people with physical or developmental disabilities or people with chronic mental illness who are 18 years of age or older and have very low incomes (at or below 50 percent of the area median income).  Section 811 participants may live in supportive housing units developed and owned by non-profit organizations, or they may receive tenant-based rental assistance that helps them rent decent, accessible and safe housing in the private rental market.  Tenants pay 30 percent of their adjusted income (approximately $200 per month) for rent which ensures affordability for those receiving SSI benefits.

For years, HUD has treated the Mainstream Voucher program as traditional Section 8 vouchers, administered by Public Housing Agencies (PHAs) for many different low income populations on their waiting lists.  Even though these vouchers were supposed to go to persons with significant disabilities who needed supportive housing, HUD did not put a tracking mechanism into place to ensure that this occurred until 2005.

Disability housing advocates believe that many non-disabled people and persons with non-significant disabilities (who could use traditional Section 8 vouchers) were receiving Mainstream vouchers. This created fiscal burdens for the small 811 program because renewal of the Mainstream Vouchers must come off the top of the 811 budget every year. For example, the FY 2009 budget requires that over $87 million be used for renewal of Mainstream Vouchers. This would leave only $150 million for the production of new units.

The bill will shift fiscal responsibility for the Mainstream Housing Choice Voucher Program to the Section 8 budget where it belongs. Although funded and renewed from 811 appropriations, these Mainstream Housing Choice Vouchers have never created new permanent supportive housing units and are not targeted to people with the most serious and long-term disabilities. By shifting the Mainstream voucher funding to the traditional Section 8 program, all Section 811 funds currently used for Mainstream voucher renewal will be freed up for production of new units via the Project-Based Contracts (PRAC) Demonstration.

Currently, only Section 811 funds can be used to construct housing units for non elderly people with disabilities.  The new bill would re-write the law to allow for other funds to be combined with Section 811 funding, thereby increasing the number of units built. The PRAC Demonstration program will “fast-track” and sustain the creation of thousands of new permanent supportive housing units every year by leveraging new set-asides of supportive housing units in federal Low Income Housing Tax Credit (LIHTC) properties. The PRAC program will also provide a rental subsidy to reduce rents to affordable levels for people receiving Supplemental Security Income (SSI) in a small but significant percentage of the hundreds of thousands of units that are routinely created every year through the LIHTC program administered by states and local jurisdictions.

FMI: To read the bill or track its progress, go to http://thomas.loc.gov/ and search for bill number HR 1675.

The Health-Care Crisis Hits Home

Patti's Comments:  How does your state add up???

Excerpt from Time.com: (click for entire article)

When you've been strong and fit your whole life, it can be easy to discount your body's first whispers of sickness as merely the side effects of daily living. Looking back over the past three years, my older brother Patrick now understands the meaning of his increasingly frequent bouts of fatigue, his fluctuating appetite and the fact that his blood pressure had crept up to 150/90. But Pat had always put off going to the doctor until he had to. Having bought health insurance that carried a $2,500 deductible, he knew he would have to pay for a checkup himself. That is no small consideration for someone who makes $9 an hour, as my brother did in his job as an administrative assistant for a lighting firm in San Antonio. He also struggles with Asperger's syndrome, a disorder sometimes described as high-functioning autism. Pat can multiply three-digit numbers in his head with ease, but he has trouble accepting the unfamiliar and adjusting to the unforeseen.

The unforeseen was exactly what turned up when Pat went in for a physical on Nov. 30, 2007, his first in five years. The doctor found high levels of blood and protein in his urine, results that were confirmed in another round of tests in December. Soon after that, Pat discovered that his urine had turned brown and foamy. In the middle of all this, he was laid off from his job, and finding a new one while doing temp work was his most pressing concern. Finally, last July my brother's doctor insisted that he see a specialist, who quickly ordered a biopsy. That's when Pat, who is now 54, learned that his kidneys were failing.

The diagnosis was only the first shock. The second came a few weeks later, in an Aug. 5 letter from Pat's health-insurance company. For six years — since losing the last job he had that provided medical coverage — Pat had been faithfully paying premiums to Assurant Health, buying a series of six-month medical policies, one after the other, always hoping he would soon find a job that would include health coverage. Until that happened, "unexpected illnesses and accidents happen every day, and the resulting medical bills can be disastrous," Assurant's website warned. "Safeguard your financial future with Short Term Medical temporary insurance. It provides the peace of mind and health care access you need at a price you can afford."

Another Humana policy you should know about

Patti's Comments:  This is a very personal entry from another family with important issues to consider.

Excerpt from Sober at the Party: (click for entire blog post)

On Tuesday March 10th my father was rushed to the Christus Spohn hospital in Corpus Christi.

In the short time that we were still hopeful that he could be stabilized, we hoped to have him moved to Austin where my sister & I could spend more time with him as he healed. The social worker at Christus Spohn worked that end of the information gathering and we had two great doctors here in Austin ready to be Dad's admitting doctor once the transfer was okayed.

The social worker did her best, but sadly informed us that Dad's Humana coverage was only regional, so even if we could physically bring him to Austin, none of his medical needs would be covered until April 1st since any requested changes go into effect at the first of the month.

In our case, dad never stabilized, and passed away in Corpus Christi on March 14th.

One of the many lessons we learned out of this tragic incident, is that you need to be sure that everyone you care about has PPO insurance so they can get medical support when and where they need it.

Taking it a bit further, I'd love to find the insurance company that would waive the timing requirement so that patients could be transferred to a hospice or other facility near their family when their time here on Earth is short.

Measure Offers Choice And Independence For People With Disabilities

Excerpt from Sober at the Party: (click for entire blog post)

Disability advocates from around the country travel to Washington to rally with lawmakers
A measure introduced today in both the U.S. Senate and U.S. House will offer choice and independence for people with disabilities. The Community Choice Act, legislation sponsored by Senator Tom Harkin (D-IA) and Congressman Danny Davis (D-IL), will bring people with disabilities into the mainstream of society and provide equal opportunity for employment and full involvement in community activities. It allows people with disabilities who need an institutional level of care the choice of receiving their services and supports in their own communities, rather than in an institution.

“The legislation sends a message to the rest of Congress and to America: We want real homes, not nursing homes,” said Harkin, one of the authors of the Americans with Disabilities Act. “Our current system effectively forces people into institutions and requires them to impoverish themselves in order to become eligible for the assistance they need. It is wrong – and this legislation changes it.”

“This legislation allows States and consumers to obtain more cost effective long-term services in the most appropriate setting for the individual. Individuals with disabilities will be able to chose between services in an institution or services at home permitting more independence, more dignity and reduced cost,” said Congressman Davis. “Without any new entitlements, The Community Choice Act will allow the dollars to follow the person, and allow individuals, or their representatives, to choose where and how to best receive services and supports.”

Under the U.S. Supreme Court’s decision in Olmstead v. L.C. (1999), individuals with disabilities have the right to choose to receive their long-term services and supports in the community, rather than in an institutional setting. The Community Choice Act would amend Title XIX of the Social Security Act to make community-based attendant care services an alternative for Medicaid recipients who are “institutionally eligible” for nursing home care.

Disability advocates from around the country traveled to Washington today to rally with the lawmakers as they announced the introduction of the measure, which is supported by all of the major disability organizations.

Please contact Senator Tom Harkin and Representative Danny Davis to thank them for reintroducing the Community Choice Act.  And be sure to contact your political representatives to support this act too!

Court program to aid juveniles with mental illness, similar to program for adults

Patti's Comments:  Treatment is much more cost effective for folks with disabilities.

Excerpt from MLive.com: (click for entire article)

Tammy Lara watched, feeling helpless, as her son began to change.  As the medication James, 14, used to control a bipolar disorder stopped working and he started using more illegal drugs, Lara's son became a different person.

"He started being aggressive with me at home, trying to hit me," Lara of Mundy Township said. "There was a lot of violence at home."

James was arrested and charged with domestic violence, but now may have a second chance as the first person in a new court program to help juveniles with mental illnesses.

The program, called Juvenile Mental Health Court, is modeled after a similar court program started here two years ago for adults.  Youths with criminal charges who have mental illnesses can voluntarily be entered into the nine-month program. If they stay on medication and follow court rules set by Chief Probate Judge Jennie Barkey, their criminal charges will be dropped.

"We need to get them on medication so life isn't that bad and give them incentives to stay on it," Barkey said. "In turn, we promise we'll help them get the medications right and help them get a start."

Mother of autistic girl reaches out to other parents

Patti's Comments:  She will be in town this week - if you get a chance to see her or her daughter, do so!!

Excerpt from Freep.com:  (click for entire article)

Eustacia Cutler sat at a piano, practicing Bach. Her daughter, Temple Grandin, was on the floor -- lost in her own world. Lost inside her 2 1/2-year-old mind.

Temple couldn't talk and refused to communicate. She started humming, crumpling a newspaper. Squeezing. Shredding. Tossing. Staring blankly as the pieces floated to the ground. Jagged fragments. Isolated and alone. Mental debris. Destined for the trash can.

...Through love and determination, not to mention the help of some amazing teachers, Cutler pulled her child out from behind those baby blue eyes. "I was going to pull her to me," Cutler said. "I was going to pull her into the world with me."

And Temple grew up to be a remarkable success story -- the poster child for autistic achievement.

"Temple Grandin has been known for years in the autism community," said Dr. Colleen Allen, the director of the Henry Ford Center for Autism and Developmental Disabilities. "She is an example of a person who can go through this life with this kind of disability and really make it."

Town supervisor says state never required to show group home building plans, which would have helped firefighters save disabled residents

Patti's Comments:  This just breaks my heart!

Excerpt from Mediadis&dat:  (click for entire article)

A building inspector was told by the state to "butt out" after making inquiries in the months before the construction of a group home that caught fire and killed four disabled residents, Town Supervisor Brian Towers said.

March 29, Towers is questioning the state's decision to refuse an inspection and believes the tragedy at the Riverview group home will force state officials to involve municipalities in the building process.

The state "designed and installed everything" and wasn't required to get a building permit from the town, Towers said last week after an emotional service honoring the fire victims and rescue workers in this close-knit Adirondack town.

"We had almost zero to do with (the inspections)," he added. "We thought it was unusual, and my building inspector tried to work with the state but was told in a frank and polite way to butt out and it's not your business."

Also, the town and county never received floor plans or blueprints for the facility, which would have been helpful to firefighters and rescuers, Towers said.

The investigation into the cause of the March 21 fire, and whether a sprinkler system malfunctioned, is continuing. Consumer Advisory Board staff members were told that an electrical problem is the suspected cause of the fire. The building was less than a year old. State officials will not name the contractor.

Town supervisor says state never required to show group home building plans, which would have helped firefighters save disabled residents

Mich. could require insurance coverage for autism

Patti's Comments:  This is an important case to watch.

Excerpt from Detroit News.com:  (click for entire article)

Could Michigan be the next state to mandate insurance coverage for autism?

Several autism advocacy groups and handfuls of activist parents from across the nation think so, as a lawsuit against the state's largest insurer to force it to pay for autism treatments moves forward in federal court in Detroit and as state lawmakers re-introduce legislation to do the same.

..."We know that with early intervention all children are helped. Not everyone with chemotherapy gets better. With autism half will improve and be mainstreamed, the other half will make improvements where they won't have to be institutionalized," said Elizabeth Emken of Autism Speaks, a national advocacy group which has undertaken autism insurance reform in all 50 states.

Most states, including Michigan, do not require insurance companies to cover treatments and services for autism, a neurological disorder affecting 1 in 150 children in the United States.

In the absence of coverage, families pay upwards of $10,000 to $50,000 per year for treatment, or their children go without at a time when autism experts say early intervention is critical.

Foot health and amputation prevention for the long-term care resident

Patti's Comments:  Science is amazing, and I really like this doctor's goals!

Excerpt from McKnight's:  (click for entire article)

Older adults in nursing homes and long-term care facilities often have multiple health problems. With medical advances in the treatment of diabetes, aging Americans are living longer with the disease. In fact, as many as one in four nursing home residents has diabetes.

Foot health and amputation prevention programs for geriatric patients with diabetes are crucial to allowing the elderly to remain functional and independent. Patients with healthy feet can continue to walk and exercise. With proper foot care, falls and fractures can often be prevented.

As chief of podiatry and director of podiatric medical education at the Veterans Affairs Medical Center, Tennessee Valley Healthcare System, and author of "Keep The Legs You Stand On," it has been my personal and professional goal to reduce the rate of amputation for patients with diabetes.