Listen To The Real Experts

Catherine's cousin said, "People who are the experts on disability are not the doctors. It's the people with disabilities." Well said, Catherine... My state legislators need to view this video...

The Future Is Now

Judge Gibney, please sign the Department of Justice agreement and help Virginia to move to a community based system of care. The agreement is important because it would transform Virginia’s system of care for people with intellectual and developmental disabilities (ID/DD) from one that is reliant on large segregated institutions to one that is focused on integrated, community-based services. What happens to people with disabilities in institutions is unspeakable! I don't want to read anymore reports like this one excerpted from the Virginia Office for Protection and Advocacy Amicus Curiae brief:

In 2007

• A training center staff member used sticks and other objects to beat at least four residents on several occasions


• A staff member fed marshmallows to a resident whose chart called for him to eat only fine, chopped, pea-sized food. The resident aspirated the marshmallows, went into respiratory arrest and suffered cerebral anoxia. He died after being removed from life support


• A resident with a documented history of swallowing inedible itesm was left unsupervised and died after swallowing several objects, including latex gloves

In 2008

• Several staff members terrorized a resident by threatening to cut off his genitals. The abuse was so pervasive they eventually did not have to verbally threaten the resident; they just held up two fingers and made a scissoring motion


• Staff members repeatedly used a wheelchair and seatbelt to restrain a resident who was able to walk as punishment or for their convenience. The resident attempted to escape the restraints and suffered injuries, including a fracture.


• A resident with a long history of swallowing inedible items was left unsupervised and swallowed 19 different objects, requiring surgery


• A resident was scalded and suffered second degree burns on his feet, hands and buttocks when a staff member bathed him in a tub with a malfuntioning water heater. The staff member did not touch the water before putting the resident in.

In 2009

• Staff members slapped a resident, forcibly removed his clothing and told him to perform oral sex on another resident


• A resident suffered multiple injuries, including a broken leg, after a staff member shook her and threq her to the ground


• Staff members failed to follow a resident's treatment plan, which called for him to wear specialized shoes. The resident suffered blood deprivation to his feet, was diagnosed with Ischemic Necrosis and was to have two toes amputated. While awaiting surgery, he was transferred to another state facility, where he choked on food, suffered cardiac arrest and died

In 2010

• A resident suffered second degree burns to her buttocks and lower back. Staff members did not notice the burns for approximately two hours. The resident was not sent to the hospital until the next day, despite having visibly blistered and sloughing skin


• A resident suffered first and second degree burns to her left arm, abdomen and thigh. Even though the resident's chart called for her to be bathed in a tub, the staff member used a shower spray, which supplied up to 167 degree water


• A resident was left unsupervised and fled his cottage through fire doors that had been left open. The resident was injured when his wheelchair overturned


• A resident was hospitalized for 10 days after staff members gave him the wrong medication


• A resident suffered at least 50 injuries over a four year period. None were reported to VOPA despite state law requiring reports of all such incidents.


• A staff member took residents' money and bought himself clothing and alcohol

In 2011

• A staff member, tasked to buy clothing and necessities for a resident, spent almost $500 of the resident's money to buy himself clothing and cologne


• A resident, who had standing orders to always be supervised due to a heart condition, was abondoned on a toilet in a locked unit for over an hour while staff and other residents went on a community outing


• Staff members placed a resident on a toilet chair that was not properly secured to the wall andm issing its lap bar. The resident fell and suffered a head injury


• Eleven residents were placed on a training center van for an alleged community outing. Instead, staff members left the van to conduct personal business, including buying lunch at a KFC restaurant. No food was provided to the residents on the van


• In an assult captured on video, a staff member hit an elderly resident so hard that he flew 6-8 feet across the room and crashed to the floor. Other staff members falsely stated that the resident had made sexual advances toward the assailant.

In 2012

• A training center had all of a resident's teeth extracted because it was more convenient than providing him with regular dental care and examinations


• A resident suffered internal bleeding, hernias, severe bruising and swelling in the groin, penis and scrotum after staff members lifted him by his support belt


• A resident suffered a head injury when she fell from her wheelchair after staff members did not properly attach her seat belt

The Don't-Care-Van

And I thought school transportation was bad.....

This past Saturday I hosted a get-together of professionals who are interested in advocating for people with disabilities, college graduate students, mentor families, and self-advocates. One of the self-advocates was a woman, Barbara, who appeared to be around 30 years old. She used a hi-tech power wheelchair and a communication board. She typed out what she wanted to say by touching a straw held in her mouth to the keyboard of the communication device. She moved her chair independently though slowly since she had only the slightest movement in one of her hands. She was funny and beautiful and had a wicked sense of humor.

She traveled to my house using a van service in our area called Care-Van. It is operated by our local bus transportation company, and its only purpose is to transport people with disabilities.

Over the years I have heard many nightmare stories about the unreliable service provided by Care-Van, and I had the chance to experience that first hand with Barbara. First, they had a tough time, so they said, finding my house to drop Barbara off. My house is probably one of the easiest houses to find in my city - truly. It is one turn off a main road, and it is easy to figure out which house in the neighborhood is mine because of the prominent wheelchair ramp. But Care-Van claimed they had a tough time finding it. I wonder if they have heard of GPS devices...

Care-Van finally did find my house, and Barbara joined in the fun. When she was dropped off, Barbara had already made arrangements to be picked up three hours later. Sounds simple, right? Apparently not.

Care-Van showed up - same driver - same wheelchair van. Barbara had already started down our ramp heading to the van when the driver appeared to tell her that he couldn't take her because his van was already full. He said he would be back in about an hour....

So Barbara had to work very hard to turn her chair around, get back in the house, and wait another hour. I personally enjoyed the extra time with Barbara, but I could tell she was anxious to get home. She explained that she had booked these travel arrangements well in advance, but that she wasn't surprised because this always happened. She couldn't begin to count the number of times she had been late for work because of Care-Van. And I have heard that from many others.

So, you've got someone, many someones, with disabilities who have a tough time finding employment in the first place, and then because a transportation company can't seem to understand scheduling and travel, the person is at risk of losing their job. And even worse than that to me is that someone like Barbara, who works very hard to have control over things in her life, things which are extremely difficult at best, and she is at the mercy of a transportation provider.

I'll say the same thing I've said about school transportation services - I know it must be a complicated task to schedule the transportation, BUT THIS IS THEIR JOB. It's what they are in business to do. And right now, they are doing a really crappy job....

Hello, My Name Is....

An incredible Dad that I know through Facebook published a picture yesterday of a business card he ordered for his severely disabled daughter. Here it is:



We've all dealt with the stares from people who don't understand or are curious about our children with significant needs. According to this dad, Roy:

"The card does two things. There's an icebreaker to remove that awkward feeling when people first meet a disabled person and an easy and private way to learn all they want to know. The website also gives them several ways to stay in touch."

And he provides an example from something he personally experienced:

"At the grocery store there were two young girls who were quite curious about Emma. The mother, however, was embarrassed by her daughters and tried to quiet them. I gave them the card and that's all it took for mom to get on board too."

What do you think of this idea? I'm liking it...a lot. Do you think it might help educate and raise awareness? Would you be comfortable handing out such a card to strangers?

Speaking of Group Homes

Almost every weekend, during outings with my family, I am asked if I run a group home. I guess it's understandable. My kids are almost all adults now - ages 21, 21,19, 17 and 16 - and other than Chip, my birth child, none of them look like me. In fact, none of them look like each other. Corey is Native American, Jessica is Latino, Ronnie is African American, and Ashley is of Italian heritage. Chip and I sport a blond, German look.

The first time I heard it, it bothered me, though I couldn't say why. Then I started thinking that if folks thought treating young soon-to-be adults with respect, love and caring was what group homes did, I shouldn't disavow them of that notion.

Of course, my years of experience with group homes is anything but what I just described. See Monday's post. But I want people to expect and believe that group homes can provide a positive, loving environment for people with disabilities. I want neighbors not to worry when a group home is planned for their neighborhood. I want families to feel peace when their loved one makes the decision to move into a group home. And most importantly, I want people with disabilities to be happy living in a group home, ensured of their safety, in a warm caring environment that is bright and sunny and clean. And I intend to make that happen.

I'm only a few years away from retirement from my career government job. When I do retire, I plan to transform my current, handicapped accessible home into a group home and prove that it can be done the way I described. I don't think it will be easy, but I think it will be worth the effort.

What do you think?

A Tribute to Fred Fay

“Disability is equal opportunity," Fred Fay told the Globe in 1998. “Anyone can qualify at any moment."

His moment arrived in his junior year of high school, when his hands slipped as he performed a move he often executed on a trapeze in the backyard of his family’s Maryland home.

Left a quadriplegic by the 10-foot fall, the young man had to decide what he would attempt to do with the rest of his life. Choosing activism, he became an early advocate for disability rights, playing a role in everything from ensuring the Metro subway in Washington, D.C., was built to accommodate wheelchairs to lobbying lawmakers to adopt the Americans with Disabilities Act.

Dr. Fey passed away on August 20th of this year at the age of 67, but his legacy will live on. A Life Worth Living, a film about Fred's life and his role in the Disability Rights Movement, is scheduled to air on PBS on October 27.

Check out this trailer for the show, and then be sure to check your local listing for the air time on October 27th.

Unstoppable

October is Disability Awareness Month.

October is Down Syndrome Awareness Month.

Did you know that October is also Spina Bifida Awareness Month? It is, and because I have an amazing son who happens to have Spina Bifida, I wanted to share some information with you!

* Every day in the United States, an average of 8 births are affected by Spina Bifida or a similar birth defect of the brain and spine.

* Spina Bifida remains the most commonly occurring complex birth defect in this country.

* The root cause of Spina Bifida is unknown and the effects for each person are different.

* Spina Bifida is a multitude of problems that affect the mind, the body and the spirit.

* Advancements in treatment and prevention have opened new doors for those with Spina Bifida.

* While it presents unique challenges, those affected by Spina Bifida are able to attend school, work, raise a family, and spend time with friends just like everyone else.

And as you know if you are a regular reader of this blog, Spina Bifida does not stop Ronnie from being a wheelchair basketball star!!!

To celebrate this month of Spina Bifida Awareness, the Spina Bifida Association hopes to bring to light through pictures the successes of those who live each day with this birth defect. There are a lot of ways in which individuals and families can get involved, and one of those ways is by submitting your vote for the “Celebrate SB,” Facebook photo contest designed to acknowledge the accomplishments of the Spina Bifida community. Voting will be open through October 31st on Facebook. Fans can vote only one time per day during this period on their favorite photo!

Please take a few moments and check out the photos! Then cast your vote for your favorite. In the process, you might just be surprised by the non-limiting nature of Spina Bifida!!

Their Lifelines

I try to limit the number of posts I write on political issues. Politics divides people, and I don't want to perpetuate that divisiveness. But, August 2nd is just days away and our politicians can't seem to play nice. As a result, I am scared to death.

There are many things on the chopping block, but the two things of primary interest to me are Social Security and Medicaid. Those two programs are the lifelines for my children. Jessica's SSDI is her only income, and it is already too low to actually live on. Ashley, Jessica and Ronnie rely on Medicaid for their health insurance. They need the medicine that Medicaid pays for to continue to live. They need the surgeries, the interventions, the assistance. None of those things are a nicety or an extra - it is their life. Just one of Ashley's seizure meds costs $450 a week! If she misses one dose, a lifethreatening seizure is a real possibility.

So please, Politicians, get your acts together, but don't do it on the backs of our country's most vulnerable. I'll gladly pay increased taxes if you leave my children's benefits intact.

Finally

I don't know if my school district is getting easier to deal with or if I am giving up the battles...or something in-between. But for today, I am going to go with the thought that the school district is improving.

The IEP meeting for my oldest daughter, Jessica, was held Thursday afternoon. Since Jessica will be 21 years old this year, we're in the home stretch of the educational process and moving into the transition process full throttle. I've had and actually still have issues with the agency that will support Jessica's employment efforts in the future, but I must say that the school district and the IEP team really stepped up to the plate today.

The IEP is good, really good and addresses all my concerns about transition. Though I didn't ask for an assistive technology eval, one was conducted, and the AT representative had a whole bunch of great ideas. And get this - Jessica is getting an IPad provided by the school district! She will use it to develop a calendar, practice some educational skills, and use it to record important information.

Everyone on the IEP team seemed to care about Jessica and what her future holds, and they really listened to my concerns and suggestions.

Why couldn't this have happened 12 years ago, and for all my other children with IEPs? I can't go back and change anything in the past, so I am going to just relish that things are going well now. If I dwell too much on how much further along my children could have been educationally, I will miss out on the enjoyment of the positive things that are happening now.

So thank you IEP team, thank you for proving that we can all care about our children's future.

I Can't Sing

I can’t sing. I know that because my third grade teacher assigned me a solo for the chorus recital, and then rescinded her offer after hearing me. I also know because my 8th grade chorus teacher gave me an ‘F’ on my report card. Throughout my entire elementary, middle and high school career, I had straight A’s except for that one F. Obviously, I could not sing.

I’ve heard the can’t word a lot of other times in my life. And I’ve heard the not-good-enough phrase more times than I feel I should have. I’m not sure why I kept hearing those things. Surely all the folks in my life sphere couldn’t be conspiring to knock down my self esteem, but it was indeed knocked down. My response to all those people was to prove them wrong (remember those straight A’s?).

I’ve spent my life proving naysayers wrong because I feel like I have to. I was told, “You can’t be a police officer.” Oh yea, watch me. “You can’t be a parent because you are not a good enough wife.” Oh yea, watch me. “You can’t do that job, or complete that, or succeed at …..” Oh yea, watch me.

Yes, I did and continue to prove the naysayers wrong, but it’s exhausting and takes a high toll on one’s self esteem in the process. I don’t want my children to travel that same path.

I refuse to let people talk about what my children can’t do – whether those people are doctors, teachers, family or friends. I refuse to let anyone say that my children are not good enough, and if anyone doubts that, I dare them to say it to me.

I want my children to grow up knowing they are unique and capable and loved, not for what they can or can’t physically do, but just for the people they are.

So, if I could only give one gift to my children this Christmas it would be the knowledge that they are now and always will be good enough and that they can do anything they want to do, regardless of what anyone says. My goal is to surround my children with people who believe as I do.

So, if you have been asked to leave our circle of friends – if I have asked for a new professional to take your place – if you feel us withdrawing from you – now you know the reason why.

Oh, and my children have never complained about my singing – especially the deaf ones :)

We Proclaim...

Please take a moment to read the piece below, and then visit the ADAPT blog, Defending Our Freedom. Also, at the end of this piece is a short video about ADAPT.

A DISABLED MANIFESTO
By John R. Woodward, M.S.W. Center for Independent Living of North Florida, Inc

We proclaim that we are born free and equal human beings; that our disabilities are limitations only, and that our identity does not derive from being disabled.

We proclaim that we have the same value as people who are not disabled, and we reject any scheme of labeling or classifying us that encourages people to think of us as having diminished value.

We reject the idea that institutions must be created to"care" for us, and proclaim that these institutions have been used to "manage" us in ways that non-disabled people are not expected to accept. We particularly denounce institutions whose purpose is to punish us for being disabled, or to confine us for the convenience of others.

We reject the notion that we need "experts," to tell ushow to live, especially experts from the able-bodied world. We are not diagnoses in need of a cure or cases to be closed. We are human, with human dreams and ambitions.

We deny that images of disability are appropriatemetaphors for incompetence, stupidity, ugliness or weakness.

We are aware that as people with disabilities, we have been considered objects of charity and we have been considered commodities. We are neither. We reject charitable enterprises that exploit our lifestyle to titillate others, and which propose to establish the rules by which we must live without our participation. We also reject businesses that use us as "warm bodies" to provide a passive market for their services, again laying down rules by which we must live for their profit. We recognize that the lines between charities and businesses are blurred in the disability industry, and we do not accept services from either if their essential function is to exploit us.

We assert our rights of self-determination in the face ofrules, eligibility criteria, regulations, customs, laws or other barriers, and we pledge not to allow any authority or institution to deprive us of our freedom of choice.

Finally, we assert that any service we need, from specialized teaching to personal care, can be provided to us in the community among our non-disabled peers. Segregated institutions are not necessary to serve us, and they have been the greatest source of our oppression, especially when they have been run by able-bodied people without our participation.

All human beings are more alike than we are different. We recognize that when we assert this belief we will find ourselves in conflict with regressive institutions and their supporters, some of whom may be disabled themselves. We do not expect thousands of years of stereotyping to dissipate quickly. We commit ourselves and those who come after us to challenge our oppression on every level until we are allowed to be fully human and assert our individuality ahead of our disability.
-------------------------

Who is ADAPT?

Don't Mess With The Girl

Boy orange ball! Boy orange ball!!! BOY ORANGE BALL!

Yesterday in school, Ashley and a classmate were playing a marble chase game. Apparently the classmate, not understanding that orange is a sacred color to Ashley, and orange on a ball is the highest order of the Holy Spirit, decided to take the orange marble and leave the game.

Ashley – the child my school district told me many years ago would never be able to communicate – the child they said would always need an advocate because she would be incapable of advocating for herself – the child they claimed would always be in her own little world due to her deafblindness – WENT TO A TEACHER AND TATTLED ON HER CLASSMATE!

School district, can you hear her now???

The Reality of the Time

I’ve recently been addicted to a cable TV show called Mad Men. It’s new season will start mid-Summer, so I have been making my way through all the previous seasons on Blu-ray. Here’s what the Mad Men website has to say about the show:



Set in 1960s New York, the sexy, stylized and provocative AMC drama Mad Men follows the lives of the ruthlessly competitive men and women of Madison Avenue advertising, an ego-driven world where key players make an art of the sell. The latest season of the show takes place in 1963.

The Premise: The series revolves around the conflicted world of Don Draper (Hamm), the biggest ad man (and ladies man) in the business, and his colleagues at the Sterling Cooper Advertising Agency. As Don makes the plays in the boardroom and the bedroom, he struggles to stay a step ahead of the rapidly changing times and the young executives nipping at his heels. The series also depicts authentically the roles of men and women in this era while exploring the true human nature beneath the guise of 1960s traditional family values.

It was that part about “1960’s traditional family values” that first interested me. Think Leave it to Beaver or Ozzie and Harriet…what I didn’t see in the show, however, was anyone with a disability. And I very clearly remember that about the late 60’s when I was growing up.

There was never a student with a disability in any of my classes at school. I never saw people with disabilities in the community or in church. Where I did see two young men with disabilities was in the home of one of my parent’s friends.

Mr. Lamden was a pharmacist and his wife was a stay-at-home wife and mother. Their two sons, both teens at the time, and both with severe cerebral palsy, lived one neighborhood over from us. While I would sometimes see Mr. Lamden at the drugstore, I never saw Mrs. Lamden or her two sons unless we visited their home.

I so clearly remember how excited the boys were to have young visitors like my brother and me. Their smiles would explode as soon as we walked into the room, and though they couldn’t speak, the sounds they made were obviously (at least to me) happy sounds. We entertained each other just by existing in the same room together, and I could read the disappointment on their faces when it was time for my family to leave.

I remember wondering, even though I was young, why the boys didn’t go to school – why their parents didn’t take them to the park or the beach. I wondered what they did to pass the day, and if they were happy and content with their lives. I imagined that they wanted more but didn’t know how to tell their parents.

I believe that those two Lamden sons were the reason my heart for advocacy was born. Even though my world is now filled with people of all abilities, I long to know what ever happened to the Lamden boys, and I so wish I could tell them ‘Thank you’.

Let's Rethink Institutional Focus

I know I've written a lot recently about the frightening and sad state of disability issues in my home state, Virginia. This is another of those posts. Virginia, long recognized as one of the worst states in providing services to people with disabilities, is sinking even further down that list, this time to 49th out of 50 states.

Why? Because once again the focus is shifting to putting people with disabilities into institutions rather than in the community.

One of our state's newspapers published an Op-Ed column this past weekend from Howard Collum from the ARC of Virginia (formerly known as the Association for Retarded Citizens. That name has been dropped and only the initials are used today).

It is well worth your time to read. And please know, what is happening in Virginia may already been happening in your state, or will soon. The state of the economy is resulting in rash and uninformed decisions by legislators forced to produce balanced budgets.

We need to all voice our committment to community living for everyone, disabled or not.


Daily Press Publishes Op-Ed by Howard Cullum,
President of The Arc of Virginia

February 28, 2010
Our Virginia state government is facing its biggest fiscal crisis since the Great Depression. The economic downturn and the loss of millions of American jobs has dramatically reduced tax revenues that pay for basic government services at all levels - federal, state and local.

Our state and local governments can't print or borrow money to solve the problem. State and local budgets must be balanced. The governor and General Assembly members have the responsibility to adopt a balanced 2010-12 budget.

While the budget cuts will be challenging, our elected officials need to look beyond short-term 2010-12 budget decisions. There are clear opportunities to reform and remake state-funded services for the future.

The Arc of Virginia has been working hard over the past year to have the state step back and reconsider its 2009 decision session to rebuild a 75-bed training center for persons with intellectual disabilities at the Southeastern Virginia Training Center (SEVTC) in Chesapeake. The decision to rebuild 75 beds was made after then-Gov. Tim Kaine had recommended closing SEVTC by June 30, 2009, as part of his budget recommendations. In addition to the rebuild on the current campus, the General Assembly for the first time ever authorized state bonds to finance 90 community beds in the Tidewater and Peninsula communities for persons leaving SEVTC.

Subsequent to the rebuild decision, a state-funded review of SEVTC residents by a nationally recognized firm concluded that all current SEVTC residents could be served in community homes. The Arc spent the rest of 2009 meeting with Kaine's Cabinet officials and agency leadership to obtain a deferral of the rebuild until the General Assembly could reassess this issue at the 2010 session.

The Arc's efforts to defer the SEVTC institution rebuild were not successful. Our Arc families were shocked by the state's decision because all of the residents can live in the community and because of the financial cost.

The institution rebuild will cost $23 million for 75 beds or $306,000 per person to build a house on the campus. Are there no homes available in Tidewater for less than $1.5 million? Meanwhile, the state is funding the building of 90 community beds for $8.4 million or $93,000 of state funds per person.

The Arc of Virginia has been on record opposing the SEVTC facility rebuild because it continues and reinforces the stereotype that there are some people with intellectual disabilities who can only be served in institutions. This is simply not true. There is no special class of persons who cannot be served in the community.
No other state is going down this rebuild road. In fact, 11 states have closed all their state intellectual disability institutions and shifted to community care. The Arc believes that the growing community wait list problem is tied to Virginia's continuing institutional focus.

Today, the average annual cost per person in one of the five state training centers is $194,000. The average cost of care for those in community homes is $95,000. Our families on wait lists don't understand why our revenue-strapped state government is insistent on using our scarce taxpayer dollars to pay three times to build and twice to operate state institutions.

The Arc believes the 75-bed rebuild violates the Americans with Disabilities Act's community integration requirement. The Arc felt so strong about this issue that it requested the Virginia Office of Protection and Advocacy to bring legal action in federal court against the Kaine administration last October seeking to stop the SEVTC rebuild. The judge ruled in December that the case was not "ripe" for judicial action as the rebuild had not yet occurred and no one was as yet in it.

In a letter dated Jan. 29, The Arc asked Gov. Bob McDonnell to suspend the SEVTC rebuild because of the high construction costs, the high operating costs, the continued segregation of persons due to their disability and the adverse impact on Virginia's future ability to fund critically needed waivers for persons now living with their families all across Virginia. These wait lists are now more than 5,900 persons with no new waivers recommended for the next 21/2 years.

It is important to understand that these persons on the waiver wait list meet the same eligibility as the residents of the state institutions. In fact, families "waive" their legal right to institutional care and sit on the waiting lists. Why? They want community care for their sons and daughters, not placement in an institution.

The issue is all about the future. The Arc wants Virginia to turn the page and reform its antiquated institutional system and adopt a "community for all" policy.

What about the persons now living in the institutions? What will happen to them? The answer is quite simple. These people will move to small community homes with all the individualized supports they need and deserve. How does The Arc know this will work? It is already being done all across the country. In addition, we're already doing it in Virginia and have been doing it here successfully for the past 40 years. Today more than 4,240 persons are already living in community homes funded by the waiver. The 5,900 people on the waiver wait lists are living at home. The 4,300 school-age children with severe intellectual or multiple disabilities attending public school special education programs are living at home.

The scary number for The Arc is the 17,000 persons with intellectual or developmental disabilities living at home with parents 60 years or older. These are the persons who will need help in the future as their parents become physically unable to continue as caretakers or die. These families do not want institutional placements for their family member; they want community care.

What about the current institution staff? What will happen to them? All the direct care and medical/clinical staff will still be needed. The Arc supports state operation of community homes using existing staff. There are concerns by families about the need for a state-operated safety net. The state can fulfill this role in community settings.

If our state government is really the country's best-managed state, it can surely step back and reassess an earlier decision to be sure the public policy and fiscal implications are understood and sound. It is the prudent and common sense thing to do. It takes leadership. The Arc is asking our governor and legislators to provide it.

Finding My Voice

Growing up, I was labeled a shy child. As a young adult, I usually let everyone else do the talking, and I was always uncomfortable in social situations. When I moved into the business world, the thought of having to speak in front of a group of people could make me physically sick.

The fact that I am no longer like that I owe completely to Ashley.

I knew before I ever brought Ashley home that I would have to be her ‘voice’. I would have to learn to speak in front of groups of people, often hostile groups. I would have to learn to stand up to doctors and therapists and sometimes question their decisions. I would have to learn to seek out what she needed and then be bold in getting those things. I would have to become her lifetime advocate.

Unlike when I was forced to speak in front of a group of people in my business community, I had no time to think and worry about my speech. I had no time for the jitters to take hold. Rather, Ashley needed my voice, my advocacy, and hesitating would not get her what she needed.

I was immediately thrown into fighting my local hospital when they chose to treat her like a ‘Medicaid’ baby and deny her and me the same considerations someone with expensive insurance would receive.

Less than 6 months about bringing her home, I had to begin my battle with our school district, fighting from the time Ashley was two years old and continuing even today to get her the appropriate school services. That battle took me to speaking before the school board, arguing in IEP meetings, trying to mediate our disagreements, and finally to Federal Court several times.

I’ve fought our state’s Medicaid system to provide for Ashley’s unique needs – a personal care aide who knows sign language and needs to be paid for that skill; a bathroom that was accessible and conducive to developing her self-sufficiency; and ongoing medical supplies when they wished to place limits.

I’ve stood before our state’s General Assembly, and in front of them and a few hundred other people in attendance, have told Ashley’s story. I’ve learned to lobby for people with disabilities and how to fight when their rights are ignored or violated.

In short, knowing that I need to be Ashley’s voice has helped me find my own voice. I can’t say that the jitters are gone completely, but I can say that I am no longer labeled shy, and I can say that I believe I am making a difference both for Ashley and for others.

Guest Blogger - Chip

My son, Chip, who is a college freshman, was given an assignment in his English class to write a paper about a problem of his choosing, and then to brainstorm a way to solve the problem. He got an 'A' on the paper, and I wanted to share it with you all also:

Group Home Residents Are People First

John Burton claims, “Residential homes are bedeviled by poor management on all levels” (Burton, xv). I wholeheartedly agree with John Burton’s statement about residential home management. The reason is because my adopted sister, Jessica Nickerson, is currently living at a group home for the mentally disabled. Having witnessed the poor conditions that Jessica experiences each day, I want to restructure how the group home is managed and enrich, rather than demean, the lives of all the residents at the group home.

Jessica, now nineteen years old, was diagnosed with brain cancer at four months of age. She had a tumor removed, followed by two years of chemotherapy and radiation treatment. All of that left her with a significant cognitive impairment. However, even worse than all of that were the nine years she spent in foster care. While in foster care she was both physically and sexually abused and as a result she is diagnosed with a significant mental illness.

Jessica was adopted into my family when she was nine years old. Due to her mental illness and resulting aggressive behaviors towards other family members, my mother made the difficult decision to place Jessica in a group home at the age of thirteen. The group home that my mother chose is operated by a large corporation, which operates in many states along the east coast. It was that fact and the fact that it is one of the more expensive group homes that led my mother to believe it would be a good place for Jessica to live. However things have not worked out that way.

From the time Jessica was placed in the group home there have been a plethora of issues. The first issue that concerned my mother was that Jessica gained weight at an alarming rate. After a week of asking Jessica what she had been eating for dinner, my mother learned that meals consisted of high calorie, fatty foods and a lack of fruits and vegetables. In fact, while I was writing this paper, Jessica had called and during the conversation she mentioned that for lunch she ate hot dogs and cheese fries. In addition Jessica was living a sedentary lifestyle on the couch in front of the television.

A second issue that my whole family noticed was that Jessica would be more aggressive than usual when she would come home for visits. This prompted my mother to call Jessica’s psychiatrist. She found that Jessica had missed about half of her appointments.

Another issue my mother encountered was that Jessica appeared dirty, unkempt and had a body odor when she came home for visits. After having her cancer go into remission, Jessica lost the use of her left arm and hand. This condition makes it difficult for Jessica to completely care for her own personal hygiene and grooming. After my mother asked the staff at the group home about Jessica’s nightly hygiene routine, she found out they do not assist Jessica with these tasks.

On August 29, 2009, my mother went to see Jessica at the group home and to deliver school clothes and supplies. When she arrived she was appalled at the condition in which she found Jessica’s bedroom and bathroom. This led my mother to write a letter to both the group home manager and the state agency that licenses group homes. Among the problems my mother documented in this letter were dried vomit on Jessica’s bedding, mold and filth in Jessica’s bathroom, months old food in her room and dangerous cleaning products left in her room (Appendix). As stated earlier, since Jessica has very limited use of the left side of her body, she is not able to thoroughly clean her own room and bathroom. The group home has twenty-four hour staff coverage that should be responsible for assisting Jessica with these tasks.

John Burton believes, “ No amount of good intentions on the part of the managing organisation will translate into good care unless the Home itself is well managed from the inside… for good residential care to become an established reality, both ‘inside’ and ‘outside’ management must work together towards one goal – meeting residents’ needs” (Burton, xv). In the case of Jessica’s group home management this is not happening. Their goal is just like many other big corporation run group homes and that is “to maximise profits for the shareholders and/or proprietors” (Burton, 48). I am not suggesting that these corporations are wrong for making money being their top priority. What I am suggesting is that if a corporation chooses this line of business, they should not try to maximize profit at the expense of resident care.

If I could completely restructure how Jessica’s group home is managed I would change several things so that Jessica’s and all the other residents’ quality of life is improved. The main change that I would make is the creation of an advisory board for the group home. This advisory board would not be hired by the corporation that runs the group, but instead it would be hired by the county in which the group home is located. The board would consist of seven members. One member would be a representative for the company. One member would be an employee from the county. One member would be representative for the staff of group home. Four of the members would be advocates for each resident of the group home. The advocates could be a resident’s family member or if the resident doesn’t have a close family member, he or she could choose another person to be their advocate. This advisory board would make sure that the company and the residents are both satisfied with the group home.

The second thing I would do would be installing cameras in the common areas of the group home. These cameras would be on all day and would also be hooked up to a digital video recording device. The cameras would also be hooked up to the internet via a secure, password-protected internet connection for the residents’ families and the advisory board members to view at any time. The purpose of these cameras would be to make sure that the staff is doing their work and to ensure the safety of the residents.

The last thing I would change is the makeup staff that works inside the group home. The current staff consists of workers with little or no training in the field of care of the mentally disabled. The staff works long hours and are poorly compensated for the work that they are hired to do. This combination makes for a dreadful work environment for the staff, therefore the amount of time in which a worker is employed is not very long. This quick staff turnover makes it difficult for the staff and residents to develop enjoyable relationships.

To fix this problem I would require all future workers to have had one hundred hours of training in the area of working with the intellectually disabled. Also the staff would have to take a test at the end of each year on their training. If a worker fails the test, he or she would have to take a class for two weeks on working with the mentally disabled before returning to the group home.

I would also increase the amount of compensation that the staff would earn. The base hourly wage would be ten dollars an hour. The hourly wage is increased based on past work experience with the intellectually disabled, references and any other applicable skills. There would be a minimum of three staff members in the home between the hours of 9 A.M. and 5 P.M. There would also be a minimum of two staff members in the home between 5 P.M. and 9 A.M. No staff member can work more than nine hours a day and fifty hours a week. Also, since working at a group home can be a very stressful job, the staff would have a stress management counselor available to them at any time.

I would be content if the group home manager took even one of my suggestions to heart and made a positive change for the group home residents. Making a decision to place a family member in a group home is perhaps the most difficult decision a family can make. The family should not have to struggle with the fear of what life is like for their family member in the group home. Group home residents, regardless of their cognitive ability, have all the rights that any other citizen has. As John Burton so wisely points out, “…homes for people disabilities… do not have to be bad places to live: they can be – and occasionally are – the very best places for their residents to thrive” (Burton, Preface).

Works Consulted
Barron, James. “New York Cited In Warehousing Of Mentally Ill.” New York Times 09 Sept.
2009: 24. Academic Search Complete. EBSCO. Wev. 28 Nov. 2009.
Burton, John. Managing Residential Care. London and New York: Routledge, 1998. Print.

There Is Hope!

Today, U.S. Senator Barbara A. Mikulski introduced in the Senate a bill to strike the terms "Mental Retardation" and "Mentally Retarded" from federal lawbooks. From the press release:

Under Rosa’s Law, those terms would be replaced with “intellectual disability” and “individual with an intellectual disability” in federal education, health and labor law. The bill does not expand or diminish services, rights or educational opportunities. It simply makes the federal law language consistent with that used by the Centers for Disease Control, the World Health Organization and the President of the United States, through his Committee on Individuals with Intellectual Disabilities.

Rosa’s Law replicates a law recently adopted in Maryland. Senator Mikulski first heard about the state law from Rosa’s mother during a roundtable discussion about special education held in Edgewater, Maryland. Due to requirements in the Individuals with Disabilities Education Act (IDEA), each student who receives special education services at public schools has an individualized education program (IEP) that describes the student’s disability and the special education and services that child will receive. Rosa has an intellectual disability – Downs Syndrome – and so was designated as a student with “mental retardation” in her IEP, giving way to people at the school referring to Rosa as retarded. Senator Mikulski promised Rosa’s mother that if the bill became law in Maryland, she would take it to the floor of the United States Senate.

“Rosa’s Law” honors a young girl whose brother said, “… what you call people is how you treat them.”

“This bill is driven by a passion for social justice and compassion for the human condition,” said Senator Mikulski, a senior member of the HELP Committee. “We’ve done a lot to come out of the dark ages of institutionalization and exclusion when it comes to people with intellectual disabilities. I urge my colleagues to join me to take a step further. The disability community deserves it. Rosa deserves it.” “Mental retardation” and “mentally retarded” are terms commonly used in federal laws, including the Individual With Disabilities Education Act, the Higher Education Act, the Elementary and Secondary Education Act, also known as No Child Left Behind, and the Rehabilitation Act of 1973.

“We know now that words have meaning, sometimes far beyond what we intend,” added Senator Enzi. “Therefore, we must be very careful about the way we describe the people we see every day, including those with disabilities, or those who are undergoing treatment for a variety of health issues. Unfortunately, the federal government has not dropped this term from our laws and it still appears in the regulations and statutes that come before our legislative bodies and our courts. I am pleased to have this opportunity to join my colleague from Maryland, Senator Mikulski, in introducing Rosa’s law. I would like to thank her for her leadership and her commitment on this issue. Simply put, this legislation will make an important change in the words we use to refer to those with intellectual disabilities. It is a much needed change in the law that is fully deserving of our support.”

When Rosa’s Law was being considered by the Maryland General Assembly, Rosa’s 13-year-old brother, Nick, successfully testified on her behalf for a substitution of mentally retarded with intellectual disability. He explained, “Some people say they are just words, and it’s not going to make a difference if we just change the words. Some say we shouldn’t worry about the words, just the way we treat people. But when you think about it, what you call people is how you treat them! If we change the words, maybe it’ll be the start of a new attitude towards people with intellectual disabilities. They deserve it.”

Well done, Senator, well done!!

Today I am thankful that advocacy efforts CAN make a difference

A Study In Contrasts

Today I’m spotlighting two very different videos on the subject of Autism. The first is titled "I Am Autism.” It is a video by Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann, debuted on September 22, 2009 at Autism Speaks' Second Annual World Focus on Autism .

The second is titled “New Day New Opportunity” and features Drew, a young adult with Autism. It was produced by the ARC of Indiana.

Tell me what your thoughts and then I'll tell you mine...

How Does A History Disability Look?

The best gifts are those that are completely unexpected. I received one of those gifts this week in the form of an unexpected advocate.

The IEP meeting to determine Ashley’s placement for her first year in high school, and to develop her goals, objectives, accommodations and modifications, and related support services was held this week. It should have been held before school ended last year, and I don’t know the reason for the delay.

The meeting was expected to be contentious – Ashley’s IEP meetings always have been. The school district had eleven staff attending – people from Central Administration, the teacher, related service staff, and a high school assistant principal. I went by myself because I would feel terrible subjecting any of my friends to hours long meetings where people often cross the line into rudeness.

While I waited for the meeting to begin, a woman I have never seen before joined me on the office couch. I had heard her tell the office staff that she was there for Ashley’s IEP meeting, so when she sat down, I introduced myself as Ashley’s mother. She told me she was a contract vision teacher and also told me her name. I recognized the name. She is retired from a neighboring school district and has the reputation of being a no-nonsense, student-centered person. I immediately felt a connection to her.

After finally being called to the meeting room (most of the school staff meets before Ashley’s IEP meeting to discuss strategy), Ms. Vision Teacher took a seat right next to me. Introductions were made all around the table, and we got down to the business of IEP development.

The school staff first read me their PLOP statement (Present Level of Performance). I suggested changes because there were not enough academic related statements in the PLOP – the fact that Ashley likes beading just doesn’t seem all that relevant to me. I then read the PLOP statement I had written to reflect what Ashley had done and learned over the summer. I also handed out current vision and hearing reports from Ashley’s doctors.

Everyone was still playing nicely at this point. We went through goals and objectives for vision, reading, math and communication. We had all tweaked these a bit last school year when starting to discuss the IEP, so there were not too many changes to be made. We then moved to history and science objectives. One of the Central Administration staff asked why we had those things in the IEP. I looked questioningly at her and asked, “Why not?”

My question was answered with the statements, “Ashley doesn’t have a science or history disability” and “We are not teaching history this year – it’s a science year.” I’m sure the look on my face reflected my astonishment. Surely, I thought, they must be kidding, and just what does a science and history disability look like? But they weren’t kidding. Obviously, we went on to discuss these issues some more, and Ashley will have science and history in her IEP.

It was then time to move to accommodations and modifications. These items don’t usually cause too terribly much discussion, but when the one that stated “Ashley will have assistive technology for computer use”, the vision teacher spoke up and started listing exactly what she wanted Ashley to have. The Central Administration staff responded by saying, “We have something like that we will use instead.” The vision teacher said, “No, she needs exactly what I specified.” I thought there would be arguments, but the Central Administration staff conceded. I was really, really liking this vision teacher.

We then discussed orientation and mobility, a service that any and all blind children should have from the time they enter school. Ashley, however, has not had O&M services since preschool. The argument always was that the school district had no O&M teacher on staff. That is a true statement, and O&M teachers are indeed in high demand. But, as I always reminded them, that was their problem. But, because I always have lots of battles to fight, that one got pushed to the back burner. But the vision teacher insisted it come to the front burner.

Again, the vision teacher was adamant, and brushed off any disagreement. So, Ashley has O&M in her IEP for the first time in eight years. Did I say I really, really love this vision teacher?

The meeting had lasted about 3.5 hours at this point. The only item left was the biggest one – the elephant in the room we were all ignoring.

Because Ashley is deaf, I believe she needs an interpreter. To me, it is a no-brainer. The school district feels otherwise. We have fought this issue for years and years. Some years, Ashley has lucked out and gotten an aide who is a fluent signer. More often than not, she gets an aide who may know 10-15 signs.

We’ve been through state complaints, independent consultant reports, more state complaints, and always the school district hears that Ashley needs more sign language support, and still they fight it. In fact, we are in the middle of a complaint right now – a complaint that has progressed to involving attorneys.

So we all knew we were not going to finish the IEP that day. We tabled the discussion about sign language services, and will reconvene next Wednesday. If the complaint is not resolved by our state Department of Education, or if the school district continues to refuse to provide an interpreter, I’m not sure where we will get with the meeting.

As we were ending the meeting, the Central Administration staff asked me if we could just include the core participants for the Wednesday meeting. I agreed. The vision teacher asked if she needed to be present. The Central Administration staff said no, but the vision teacher turned to me and asked, “Do YOU want me to be there?”

Again, did I say I love this vision teacher?

Here We Go Again

Some of you may remember that I filed a complaint with my state Department of Education at the beginning of the last school year. In the complaint, I alleged that the school district was not implementing Ashley’s IEP because they did not have an aide who was sufficiently proficient in sign language assigned to Ashley. Ashley’s only means of communication is sign language.

The Department of Education agreed with me and found my school district to be in non-compliance with Ashley’s IEP. The process then started for us all to agree on compensatory services for the time missed, and other measures to ensure Ashley’s IEP would be followed.

The compensatory hours were provided after a false start, and one of the other items I insisted upon, an independent evaluation of both Ashley’s signing skills and the skills of the school-provided assistant (hired after the complaint was filed), was finally scheduled towards the end of the most recent school year.

Not surprisingly, the independent evaluation supported what I had been saying. But has that changed anything at school? Nope, not yet. The same incompetent aide (at least in my opinion and the opinion of the evaluators) was assigned to provide Ashley’s ESY services. So, what did I do? Yep, filed yet another complaint.

The newest complaint, which pretty much is a duplicate of the original one I filed last September, went in the end of last week. I’ve not heard anything yet, and the bureaucratic process moves rather slowly. To top things off, no IEP meeting has been held to determine Ashley’s program for next year, her first year in high school. No school has been selected yet either, and you know how difficult it is to get teachers and other school staff to work during the summer.

Ashley has always been a child that loved going to school, but recently has been signing, “school no go”. Her spirit has been crushed and she is very frustrated. My homeschooling efforts have increased dramatically, and she is doing well with that fortunately. But I will not give up on insisting that the school do their job.

Maybe one of these days they will realize that. I am nothing if not very, very persistent.