Because We Care - Beyond Inclusion

HOW CAN THIS HAPPEN?

The scenario below is true. The client was 14 at the time. He has a rare genetic syndrome which causes a global developmental delay, early onset pediatric dementia (his brain is shrinking), behavior problems coupled with manic and psychotic episodes. This was after his 5th hospital admission in 1 - 1/2 years.

He was on a Home and Community Based Service Waiver at the time.


12/2008 - Admitted to Seattle Children’s - 2 week admission (4th Admission for this child to Inpatient Psychiatric Unit)

12/2008 - readmit (5th Admission) - Psychiatrist recommended out-of-home placement for safety and health of child and his family. RSN stated “would not approve” readmission again

1/2009 - DDD Region 4 Children’s Manager told client’s DDD caseworker - “Do not offer them anything”

1/2009 - Discharge meeting at Seattle Children’s, DDD Psychologist, DDD caseworker, MD, Teacher, Nurse and discharge planner present. No availability in DDD residential system. Mental Health Residential placement would not be appropriate for him.

When asked about next crisis due to readmission being denied, only solution offered to parents by this group was to

“CALL THE POLICE”


It got worse before it got better:

He now lives at Fircrest, an RHC, he’s safe, happy, well cared for and healthy – a CHOICE that was denied to him for over a year.

Why does DDD want to deny a safe and healthy life to those they are supposed to help?

The House Where Kathy Lives

MORE THAN JUST A PARTY

Hawaiian theme, marathon kareoke, shy smiles and out-loud laughter, home cooked potluck, old friends, family, professional and regular staff dropping in, and eventually, great giggles from Kathy as she whirled in her dancing wheelchair: The party at Kathy's house started outside on the covered patio, but came inside as breezes blew cooler.

Twenty years of familyhood at Elm Hall is something to be celebrated! Though a few residents have moved to other houses, the manager who opened the house and one AC-3 ("attendant counselor" supervisor) along with 3 of the original residents are still there. Elm has been home especially to medically fragile people (with dd); and so it is not surprising that in that time, several have "gone on to watch over us," as" Manager Mom" put it. (I am calling her "Manager Mom" for this post because I have not asked permission to use her name; and though she does manage the staff and their care of residents, her role is very much that of "Mom." She shows the love of a good mom to residents and staff, alike. Somehow, everybody gets what they need. )

Today, for the first time, I heard about the preparation for Elm's opening 20 years ago. From Manager Mom's speech: "One challenge was: How do you find staff who want to work in an area with total care, fragile people, lots of lifting and all wheelchair?" As it turned out, just enough people really wanted to work under those conditions, and they were just the right staff for the job!

This was the beginning of a housing change at Fircrest; and Elm had just been remodeled to accommodate half as many residents as Fircrest had formerly housed together. The conversion to nursing facility would follow soon after. A careful selection process had occurred so that the right folks would be transferring to the new house. They were to move all-together; so, for 3 months, the entire new staff worked side-by-side with their usual caregivers in order "to learn all of their idiosyncrasies, what they needed and liked in their daily routines as well as how to meet all of their medical needs." This also gave the residents time to get to know and trust their new caregivers before changing environments.

When Kathy moved there from another house on campus about 8 years ago, staff were oriented to her very extensive needs in a similar way. Manager Mom first learned every little nuance of her care, wrote procedures and trained staff, often one-on-one, so that Kathy absolutely got what she needed in the way that she liked and needed it. She is loved there and she feels it. She has been truly blessed to have had the same, wonderful manager-habilitation professional (HPA) and direct caregiver team for all of that time. A few have left and a few have taken their places, but turnover with it's accompanying disorientation has been minimal.

Just one parting thought. As a nurse, I know that having family around can be stressful, especially if they are like I am, wanting everything to be perfect for their loved one. On the other hand, as family, it was essential to my peace of mind to be there on a daily basis to be sure the details of Kathy's needs were attended to in the right way. Manager Mom handled me and my daily requests wonderfully, almost always accommodating them and/or helping me understand why not if she could not meet one. Problems never went unsolved. When, eventually, I did not come as often, I had confidence that Kathy was in the hands of people who knew the importance of each task and, truly caring about her as well as feeling supported, themselves, would not short-change her in their hurry to accommodate all the other, equally important needs of everyone else in their care.

As you might have guessed, I am extraordinarily grateful.
Saskia

Advocacy Concerns

This is an abbreviated version of an open letter to people who oppose inclusion of Residential Habilitation Centers (RHCs) in the continuum of services for our family and community members who have disabilities. I felt the need to write it after receiving an extremely misleading Action Alert opposing HR 1255 (HR1255 provides a process by which parents & guardians, on behalf of their children/wards, may opt out of class action lawsuits with which they disagree.) Also, I found the documentation they provided in response to my questions to misrepresent the Supreme Court Olmstead Decision. Actually, "Olmstead" does not say that anybody is required to live in a specific place. Instead it affirms the right of an individual to live in the setting that best suits him/her - be it a private home, group home, institution. In so doing, it affirms the role of institutions within a full continuum of care.

I respect the energy and commitment that you all have to your causes. What I don’t understand is how, as strong advocates, (personal and representatives of public agencies) , you can work to deny or diminish services to people with such severe and complex needs within the DD population. I could never envision closing RHCs because I see the necessity for their existence. If you actually went, toured, met and spoke with residents, family members and guardians, you would see that each RHC is a community as well as the community of choice and safety for many people. I believe you would come away recognizing their critical role in our community.

Trying to take this choice away appears to dismiss their residents as not worthy of being safe. I saw this even before our son was in need of the services. When he was eleven, I would not have considered institutional placement for him but I would not have cut that option off for those who needed it. I realize that there is a wide variation of needs and just because one person with DD does not need those services, it does not mean that no person with DD might need them.

As our children age and change, different issues arise. As a parent who has lived through it, I can say that a dual diagnosis changes the whole scenario of needs. Care and supervision for safety becomes extremely complex, demanding and person intensive.

The estimate of the incidence dual diagnosis, (dual diagnosis is developmental disability and a mental illness diagnosis) is between 30-50%. (NADD – An association for persons with developmental disabilities and mental health needs www.thenadd.org). Often in speaking and advocating for people with DD one forgets about this extremely extra complex group of people.

Our son is very active in community events both inside and outside of the RHC. He is a well known participant in the Seattle Parks and Recreation Specialized Program – both the Saturday Activities and Day Camp. He participates in neighborhood celebrations and concerts, attends church every week and many other activities.


I invite you to join me on an RHC tour, to meet him and learn why an RHC is the home of choice for him and others with such complex needs that they can only be managed in an RHC community.

Please, do contact me – I’d love to have a discussion, take people on tours of Fircrest or Frances Haddon Morgan Center, introduce you to my son and talk about how we can come together to truly advocate for ALL people with disabilities.

People may contact me personally at cherylfelak@msn.com

Therapeutic Gardens

Gardens are magical - that's my take on them. I have enjoyed gardening both for my relaxation but also to interact with our son. The garden offers many topics of conversation - from the weeds to the scents of the herbs to birds chirping to bees nesting. We have followed flowers from seeds to gorgeous blooms and grown vegetables and berries. The garden offers education in so many aspects of life - there are endless opportunities in the garden to use for education and therapy.

I have wanted to enroll in the Therapeutic Garden certificate program through the UW Continuing Education but do not have the funds or time right now - it's on the horizon of things to do though. I browsed through their site today and came across this video about an upcoming therapeutic garden. This is such a wonderful plan. It is so true that our disabled family members need a secured area to go outside and enjoy nature.

There is a lovely garden on the grounds of Fircrest. I have attached a couple of links to information regarding that garden. We love to go there to visit and walk the garden. We love how the planters are built so that people can garden from wheelchairs or waist height. The water is such a great addition to the garden too.

I know from our small garden how much enjoyment that our son gets from it. He knows where each herb is planted, where to get berries, where his pumpkins, cucumbers and tomatoes grow and loves the various colors of the flowers. We've arranged various sitting areas in the gardens for him from which he can talk to me while I'm out there too.

Gardens are magical!

Links: Definition of Therapeutic Garden: http://pce.uw.edu/uploadedFiles/Offerings/Master/Certificates/Therapeutic_garden.pdf

Articles on Therapeutic Garden at Fircrest: http://larch.be.washington.edu/features/design_build/11505-L1.pdf

http://occupational-therapy.advanceweb.com/Editorial/Content/Editorial.aspx?CC=197378

Short video on planned garden at Washington Soldiers Home: http://pce.uw.edu/basic.aspx?id=4392

***********A REGULAR GUY***********

Excepts From a Funny & Moving Book

Here are excerpts from an enjoyable, and eye-opening story by Barbara Shumaker. I recommend a visit to the website cited below for the entire piece.

'"we got a letter from an attorney asking us to contact him about the bicycle accident involving Matthew. It turned out that while riding his bike, Matthew had apparently collided with a young boy on his bike the month before.

"Matthew? What's this about a bike accident?"

"Who told you?"

"Someone sent me a letter. Was the boy you bumped into hurt?"

"Pretty much."

"Dear God.
Was he bleeding?"

"Probably. Am I in trouble?"


My husband and I came to the heartbreaking conclusion that Matthew was no longer safe in the community where he had grown up, and his impulsive actions were putting others in peril. He needed more supervision, more than we or the local school could provide."

"The good news now is that Matthew is thriving at Camphill, and is an important part of its community of disabled people. He goes to class, cooks and does his own laundry. He prunes trees, tends an organic garden and takes care of the grass. During the winter he shovels snow gleefully, and has become fascinated with weather patterns in the Northeast. He brags about his new found responsibilities, and tells us he is good at hard things."'


The entire story appeared in the on-line newspaper, SF GATE, March 15, and in the SF Chronicle. Read it at : http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2006/01/15/CMGQIF603V1.DTL#ixzz0jFDn9asl

Barbara Shumaker has written a book about her son, Mathew: It is available on her very resource-rich website: http://www.laurashumaker.com/?p=120

Camphill Special School is a private, non-profit residential and day school in rural Pennsylvania. A "Waldorf" school, it was founded and is operated according to the philosophy of Rudolf Steiner. I found my visit to their website an inspiring experience that expanded my sense of the possibilities.
Saskia

Expanding Persective

Recently, I started this blog, hoping that conversation among people with their differing needs & experiences would lead to mutual caring & support &, eventually, to mutual, creative solutions to the problems we face.

Care for people with dd is very expensive, but thinking back over the many years I have been involved, assuming there is not enough money for this or that only assures that the thing cannot be afforded. We must go for what is best for the individuals who need the services. That is where the progress always has been made.

Where my sister, Kathy, lives, all her needs are provided for, which is a wonderful blessing. I know that I would burn out in about 6 months if I tried to take care of her, myself, even with help; and even then, she would suffer losses, for it would not be possible to provide from home all of what she needs. Her needs are just too intensive. If there were a situation in the "community" that could meet them all, it would be hard to justify the extra money it would cost when there are so many others who also need services.

This evening I was contrasting her living situation with another I encountered a while back. Kathy's Fircrest home is brightly lit, uncluttered and spacious with communal living room and activity/dining room shared bathroom and wonderful bathtub with excellent access, and semi-private sleeping areas for her and her 6 housemates.

The other situation I encountered as I was leaving from a meeting in a small, western Washington town. I was just approaching the freeway on-ramp when I noticed a dog trotting along in the same direction. I stopped & enticed him into my car. Finding that he wore a tag with an address, I took him home. The house to which he belonged was more on the order of a shanty. The property had not a plant nor blade of grass growing on it, just a wide expanse of hard dirt. The house, badly in need of paint, appeared to be only about 400 square feet.

A young man came to find out what I was doing with the dog and gratefully accepted custody of him when I explained. He said neither the dog, nor the house was his, but that the owner, his foster mother, was in the hospital, having taken a fall. He asked me inside so he could take my name and address for her. Inside was clean and old-fashioned homey, with lots of family photos on the walls of tiny, crowded rooms, the ones I saw, anyway. The young man chatted, praising his foster mother to the skies for having raised him and several other foster children, some of whom he called "mentally retarded," and all of whom he claimed as "family." He explained the children all had grown and were gone, now, didn't say where or how they were doing, except for one he said had gotten into trouble with the law. Most of his conversation was in praise of his foster mother whom he knew as the biggest hearted, most wonderful woman, ever. As I looked at the tiny living room, I wondered how she had managed with so many in such modest circumstances.

And I wondered how typical it was for DSHS to support living situations such as this one. I thought about the love the young man had experienced, pondered the struggles the woman must have had to keep it all together. Listening to the young man talk about his former life in that house with it's owner and all the children she took in who might not, otherwise, have had the love she had to offer, my perspective was expanded.

When I think of this, now, it helps me understand how there can be the sense of injustice that some express about the resources that are spent in residential habilitation centers (RHCs) for people like my sister. Then, I think about the fact that she and those with whom she lives need every resource that they are provided. They should not be deprived of what they need because of the needs of others. Instead, we all should be working toward more for those who receive so little or nothing at all.

I am convinced that in our society, there is plenty of money and plenty of resources. What is missing, rather than money, is the will to prioritize it's use for these purposes. It is there that we need to be addressing our collective attention.

As this blog grows into the inclusive vehicle that I envision, I hope to see us brainstorming with crackling creativity to find or develop the financial where-with-all to meet the needs of everybody. If this seems like pie-in-the -sky, perhaps that is what it will turn out to be; but for certain, nothing new or more creative will happen without some new kind of effort and thinking; so I invite you to come along, share your experience and perspective so others have a sense of who you are and can begin to see through your eyes. If enough of us do this, a sense of "our community" will emerge. From there, we could surprise ourselves with what we co-create.

I surely hope you will join in. I just know you have something very unique and special to share, even it it is something you are used to and, so, take for granted. How about it? You can click on "comments" and write or paste-in your contribution, or you can email it to me & I will post it for you. Saskialucianow@gmail.com
Together we are Awesome......Saskia

RHC Closures=Jail

Here is still another lucid argument & plea by the mother of a person with autism. Having recently lived in the "community," her son now is in an RHC." One can readily understand his family's strong support for retaining them.

"This is my family's story if Fircrest is closed:

We just barely survived Fodor Homes and the stress of the closure. Our severely autistic son, who can be violent, came home to live with us; and it put me into the cardiac care unit at Virginia Mason for one week. We had to pay, out of pocket, six thousand dollars for one month for his respite care. Nobody even offered to help us.

If we build up services too fast in the community we will be repeating another Fodor Homes scenario. Look at the mess the adult homes are in! Didn’t we learn this the last time? Why are we going to do it again to severely autistic people and their families? Haven’t we suffered enough already? Our kids are autistic, this should NOT be a criminal offense nor should it be a reason to toss our kids out of medical support living situations into the “community” where these medical and behavioral supports do NOT exist.

Once again, we are repeating history. We still see, everyday, the results of state closure of Mental Hospitals that has resulted in homelessness for millions of mentally ill people. Are we going to do the same thing? Are we now going to make autistic people the new homeless? We do not have the proper services outside the RHCs to care for many with severe autism, so are we going to ignore the problems and solutions. Just like we did the mentally ill and veterans, so that we can save a few bucks?

My son should not be thrown onto the street or into the justice system JUST BECAUSE HE IS AUTISTIC! Are we going to become the state known for jailing it’s autistic citizens? Yet this is EXACTLY what we are doing. Closing the RHCs will not make severe autism go away, it will just dump these kids, when they hit a crisis, as they do, into a Jail which has no ability to meet their medical needs at all. This is not a fear, it is a CURRENT REALITY.

If Fircrest is closed it will put my son in danger of the three strikes law just because he is profoundly autistic. My son can be aggressive and this is common for those who are non-verbal autistic. My son does not understand that it is against the law to assault. In fact, he does not even know what the law is. He can not, at times, control his emotional outbursts. This is why he has the intensive medical and behavioral intervention that the RHCs can provide him. He will more likely be physically and sexually abused in prison. My son will take off all his clothes if he even gets one drop of water on them. What do you think will happen to a handsome, non-verbal, autistic, person in jail when they and take off all their clothes because they are wet? How can we put someone like my son in jail or prison? What does this say about us in Washington State that we punish the innocent? What will the rest of the country think about us? If the safety net of Fircrest is taken away, my son could be sent to prison simply because he is autistic. How would you feel if this was your child?

Jailing autistic people will cost the state and us more money in the long run. One lawsuit that the state lost was for 4 million in Kitsap County because one poor autistic man spent 4 years in jail without being charged just because he hit his mother due to an autistic crisis. We are shutting down our safety net that will prevent many future lawsuits.

Advocates are supposed to help families like mine but they don’t and if Fircrest is closed it will make my life a living hell. It will put my 19-year-old son at risk to go to jail, prison, or become homeless, and it will make him an easy target for emotion, physical, or sexual abuse. This is about money, it is about taking away what my son and other people like him need to survive so that others can have the funds. This is discrimination and it is putting vulnerable autistic people knowingly in harm’s way. Why would any of us think that autistic people are better off in Jail or prison? Why?

Rebecca Sargent"

Gram's Letter to Legislators

Here is a grandmother's letter that was recently sent to legislators. I am posting it in the hope that it will help RHC opponents understand the importance of the programs for which they are advocating closure, and too, that along with the "community," RHCs have also sustained severe cuts in revenue, forcing elimination &/or decline of important services.

"Our grandson is in an institution; and he and many others are in desperate need of the care and safety offered to them there. They are residents that are unable to care for themselves mentally and/or physically. Many do not have families or the families that there are can not physically, emotionally or financially provide the care and safety to their loved one. Our grandson was born with severe Downs Syndrome; is aggressively Autistic and mute. He is unable to care for himself personally and requires 24/7 one-on-one care. After 18 years of being cared for at home, he was placed in an institution and has made lots of progress.

In the short time he has been there, there have been many cuts in the budget and the facilities. First it was the closing of the indoor pool and then progressed to the closing or eliminating of the senior citizen center; infirmary and outside activities. Recently the cafeteria has been closed and food service to the units has been eliminated on weekends. Our grandson and others have had their caregivers reduced from two caregivers for each resident to one caregiver to two or three residents. You can really see how this has affected him and how he has regressed, recently, as I am sure is true with many more of the others. The facilities have suffered severe cuts to their budget already and should not suffer anymore.

Other areas have closed their facilities forcing residents like our grandson into group homes. Residents like him could survive BUT would not be able to function properly. They would have to be heavily drugged and kept under lock and key. These facilities, either funded group homes or private ones, can not offer the educated 24/7 caregivers, daily medical monitoring or the safety that is needed.

We also have to LOOK AHEAD to the fact that when these programs are found to not be working or can not get adequate funding, or in the case of private ones they are not making a profit and have to close, the residents will be left with no place at all. THEN WHAT? We have to look ahead and not just act for the moment.

DON’T SACRIFICE THE RESIDENTS TO BALANCE THE BUDGET. BUT MAKE CUTS ELSEWHERE.

Please rule with your hearts and not your budget. All those like my grandson desperately need our help to be safe, healthy and in the best of conditions possible. Their families also need to have the peace of mind knowing their loved one is safe, healthy, cared for and as happy as possible. Please do NOT eliminate or cut the budgets and funding of these institutions.

Respectfully,
"Gram" Donna Evans
(published with the author's permission)

Prosecutor’s employee delivers with speed

Here is a heartwarming, "community" oriented, success story. It is reprinted from The Journal on line:

By Lauren Pack, Staff Writer 10:38 PM Sunday, February 28, 2010
HAMILTON — Elizabeth Crehan loves sports. Known as Liz or Lizzy to most, she excels in softball and is looking forward to playing shortstop this spring. But perhaps she should have considered track, because the 39-year-old laps everyone daily in her deliveries for the prosecutor’s office.
Crehan, daughter of retired Butler County Judge Matthew Crehan and sister of attorney Ken Crehan, showed off a trusty pair of black Reebok sneakers when asked what makes her so swift.
Her deep brown eyes are focused as she darts from office to office with mail, files and legal paperwork that has to get to the right place — now.
A no-nonsense haircut and serviceable outfits are the right fit for a full day of work, but make no mistake — there is nothing ordinary about Crehan’s work ethic or smile. She knows everyone in the Government Services Center and always takes time to say “hi” and catch up on the latest scuttlebutt.
“She makes us smile,” said Marcia Holstein. prosecutor’s office receptionist.
Crehan, a Hamilton High School graduate with development disabilities, has held the position for 18 years. She has no plans of making any changes.
“I like what I do,” Crehan said. “I would miss my friends too much,’
Her father laughed and said, “they have to make her take a vacation.”
Despite her challenges, Crehan has a memory for numbers, which makes an often-painstaking job a breeze for her. She pulls scores of case files for the seven common pleas court dockets.
“She can pull 70 lickity split,” Holstein said. “It’s amazing how she remembers the cases by their case numbers.”
When not on the run, Crehan operates the shredder, destroying paperwork. Sometimes it takes hours.
“It’s my job,” Crehan said, shrugging at the notion that it is a tedious job.
The ‘can-do person’
When Crehan’s father, Matthew, got involved in politics in his election bid for Butler County common pleas judge, it wasn’t his late wife Sheila’s cup of tea. So he called upon his daughter as his escort.
“She got to know all the politicians,” the retired judge said with a laugh.
Her time on the event circuit also helped land Elizabeth a job in the prosecutor’s office. It’s a job she has relished for nearly two decades.
At the age of 20, the Big Blue alum was offered a job as a “runner” by then-Butler County Prosecutor John Holcomb. Eighteen years later she is still running.
Fellow employees and hundreds of others in the Butler County Government Services Center who consider her a friend say she is rarely in a bad mood or absent from work.
The 39-year-old marks her rounds daily, moving swiftly and easily to county departments making deliveries. Then she settles back to the office on the 11th floor for filing and document shredding duties.
Her description of daily duties:
“I come in, take my jacket off, leave my pop on the table, sign in, go to the clerk’s office to get things stamped, drop off stuff to offices, take the mail to judges’ mailboxes, bring mail up, go to auditor’s office for Susan and Melissa,” Crehan said. “That’s it.”
She also tries to squeeze in some document shredding and filing time.
Around the office, Crehan is known as the “can-do person.”
“You will often hear her name on the intercom,” said Prosecutor Robin Piper, “because we need to get something somewhere fast.”
Piper said Crehan is the personal pipeline for his office to other county offices. He described her as efficient and focused.
When Crehan isn’t working, she is at sporting events, movies, dances or out to dinner. She loves vampire movies and Mexican food best. Many of the events and outings are coordinated by the Butler County Board of Developmental Disabilities.
“She has more of a social life that I do,” said Matthew Crehan.
Elizabeth was adopted as a baby. Despite countless trips to hospitals, her developmental challenges were never fully diagnosed, her father said. He said he now believes she has a form of autism.
It was important to Matthew and Sheila Crehan that their youngest child be as self-sufficient as possible. And today she is.
Hidden talents
Crehan lives in West Hamilton with her cat, Gabe. She shops with her father for groceries, but cooks for herself and sometimes bakes treats for co-workers.
“She always looks on the bright side. Maybe more of us should try that,” Matthew Crehan said.
Sandy Fowler, a county court administrative assistant, drives Crehan to and from work most days. Fowler has sisters with developmental disabilities and also considers Crehan her sister.
“She is off the charts,” Fowler said about Crehan’s independence and work ethic. Fowler also noted another of Crehan’s hidden talents — singing.
“She loves to sing with the radio — loud,” Fowler said with a laugh.
Matt Reed, Crehan’s softball coach in the county’s therapeutic recreation league for the disabled, said you can set your watch by Elizabeth. She eats lunch nearly daily with Reed, who is staff attorney/magistrate for Butler County Judge Keith Spaeth. Many days Spaeth also joins them.
“She is always here on the dot for lunch, but she also knows when it is time to go back to work,” Reed said.
One day Reed said he told Crehan she was infamous around the courthouse.
She smiled and said, “No. I’m just popular.”

LONNIE’S STORY by Lonnie's Mom

Lonnie was one of those children who were admitted to Rainier School when he was barely fourteen years old. He will be sixty-two this year. He is the oldest of five siblings – one brother and three sisters. From the day Lonnie was born, he was extremely hyperactive and had an attention span of zero seconds. Elementary school class work was difficult for him. He couldn’t stay focused. Now, we call this syndrome dyslexia with ADHD, Attention Deficit Hyper Activity Disorder. For years Lonnie had difficulty falling asleep at night. When he was five years old he was diagnosed with epilepsy. The mild jerks that occurred while going to sleep were petit mal seizures.

Lonnie became increasingly frustrated as he approached adolescence and the severity of his seizures worsened. He developed severe behavior issues, and grand mal seizures. He was placed in a special education classroom only briefly before he went to live at Rainier School. Our family was so exhausted from caring for Lonnie for so many years!

Lonnie has done well at Rainier School and still enjoys the rich, social interactions of a community that is appropriate for his disability. He has more friends than anyone else I know. He has the freedom and safety of living on a college-like campus, cared for by people in all departments who are sensitive to the needs of medically fragile, multi-handicapped people. Everyone is considered a direct caregiver and is expected to provide expert service.

He is not isolated and restricted from the so-called “community". Rainier residents make trips to nearby shopping malls, zoos, fishing ponds, etc. and participate in community events as well as host activities on their own premises. Every resident is enrolled is some sort of vocational training or active treatment program. Lonnie is a grand example of what Rainier School has done for a person with such complex needs. It is appalling that anyone would want to take this away from him and the other Rainier residents. The current focus should be on expanding the critical services and living arrangements that Rainier School can provide to the many underserved, off-campus developmentally disabled people.

LOOK AROUND YOU! Small community developments have sprung up all over the Puget Sound area and country: senior retirement homes and nursing homes of all sizes and description; a multiple variety of apartment and condominium complexes with shopping and entertainment opportunities on the same property; recreation and medical complexes to meet special needs. All the places in the surrounding region wouldn’t have been built if they weren’t determined to be the most economical and efficient way to provide their special services. It seems to me that the planners of our Residential Habilitation Centers (RHCs) were ahead of their time with building facilities that were appropriate for our developmentally disabled citizens. The RHC community is appropriate for meeting all of their special needs – developmental, social, vocational, medical, nursing, psychological, recreational, behavioral, personal self-help, pharmaceutical, etc. It is puzzling how some in the developmental disabilities community think otherwise and persist with trying to persuade others to think like they do.

Many of us have experienced following the “modern twenty-first century” thought of placing our loved one in a “community” home. We tried placing Lonnie in one of the well-supervised, high-quality group homes for developmentally disabled people – twice. Both times I had to remove him immediately when I discovered that he was having increased seizures because of missed medication and was literally being placed in life threatening situations from lack of supervision. By the community advocates own words, deficiencies abound. If this sector can’t take care of the “least” vulnerable people, i.e. senior citizens, how are they going to cope with the “most” vulnerable? They will predictably end up in hospital emergency rooms, city and county jails and prisons, or in revitalized city morgues.
Jeannie B., Lonnie's Mom
(For Friends of Rainier link, see list at right)

KATHY'S STORY

I am guardian of my sister, Kathy, who entered my life as a brain injured newborn. I was 5 at the time. She was placed in my arms within the first hour after she arrived home. From then on, I thought she was mine.

Doctors advised my parents to "put the baby away and forget about her." That was never an option. Kathy would stay at home in our family. Period. In order to assure resources for Kathy, mother became very active, organizing parents and raising funds on behalf of children with cerebral palsy and mental retardation. At that time few services were available and public support programs were not even on the horizon.

Blind and unresponsive, Kathy met the "clinical" definition of a "vegetable" until she was 13 months old, when brain surgery, sub-dural drainage, liberated her to begin to engage with us and life. From then on, she pushed to make progress, therapy was found for her, and we all rallied to help her.

Helping Kathy learn was the theme of our lives. So much so that, as an adult, when an education application required an autobiography, my first attempt yielded only a list of Kathy's developmental accomplishments! A second try required me to rack my brain to dredge up the faintest memories of my own life markers.

When I was 13 and Kathy was 8, medical bills that could not be paid despite a 2 parent income, 24-7 care, and other stresses finally added up to divorce. One parent could not provide the 24-7 level care that had barely been accomplished by two, so, Mom tried live-in help, but was unable to find people who could handle an active, but physically unstable youth who had grand mal seizures, required constant, protective attention, medications and therapeutic support. Very few options were available for out-of-home placement, but she finally placed Kathy, during the work week, with a wonderful woman who took care of children with mental retardation in her home. We brought her home on weekends, and for the most part, I took care of her. After a time, though, the caregiver grew concerned that Kathy might be injured by the other, more mobile children, and, so, asked Mom to find another placement. She did, but it did not work out well at all. Kathy was neglected and abused; and so, after hospitalization, Mom brought her traumatized daughter back home to live. Kathy had been through so much, she cried and laughed uncontrollably & almost constantly.

By this time, I was away at nursing school. Mother, now remarried with a baby, had been able to hire a care-giver to help her. But her new husband had a heart attack, and his doctor advised her that he would die if the stress at home did not abate. Desperate, she talked a nursing home administrator into accepting Kathy; but they were not licensed to provide the level of care she needed. So, finally, she was forced to reconsider her vow never to place Kathy in an "institution." There were just 2 problems:
1. Admissions to the "institutions" were closed. 2. The supports Kathy needed in order to sustain the skills she had mastered were not available in Washington State's institutions. Still, she had to do something to save her husband's life; and Kathy had to have care. Out of other options, Mother prevailed on friends who knew the governor and his wife. With the governor's intervention, Kathy was admitted Fircrest.

The deal was done by the time I graduated. It was a nightmare, really. If RHCs of today were the same as Fircrest was, then, I would support closing them all.

I got an apartment and brought Kathy home to stay at Christmas. I thought if it worked out, I would find a way to keep her there with me. However, without the support she needed, she had already lost the skills that would enable me to care for her. I had been used to her walking and getting on and off the toilet with minimal help and being able to stay in bed without falling out. She had lost those abilities, and, moreover, without having been able to use her body, she was stiff and spastic, as I had never known her to be. I was devastated by my inability to manage her safely. Completely disillusioned, I took her back. I felt beaten and I could not fathom what else to do. It felt as if I was abandoning her. I am sure it felt that way to her, too. On one level, I was.

Fortunately, Fircrest improved. The Federal law, "Title Nineteen" was enacted: In exchange for improving conditions, providing programs and meeting safety, environmental and therapeutic program standards which were raised every year, matching Federal funds were provided to the state for the support of residents. Literally, if gradually, Title Nineteen transformed "institutions" from minimal-care-warehouses into exemplary, comprehensive care & resource centers, the residential habilitation centers (RHCs) of today. They are funded and focused for individually tailored support. And, today, as then, Federal audits ensure that standards are being met.

Kathy has never regained all of the skills she lost, but she has come a very long way back, and she is happy and comfortable. Remarkably, with the excellent support she is provided, she is still growing, recovering and learning at age 61.