Archive for February, 2019

Our Story written 7 years ago #SamanthaMartin

February 4, 2019

Written seven years ago:

February 4, 2012

Most know our story because many have lived it alongside us. However, I am often asked to recall the details to those who are unfamiliar so, here, is Samantha’s story in brief: 

Our daughter Samantha was born in 1993 with a rare genetic condition called tetrasomy 18p syndrome, autism and absence seizures. Samantha suffered sudden cardiac arrest one day and died unexpectly. NO ONE with the syndrome, but our little girl has succumbed due to the disorder! 

At the time of our daughter’s birth, dire prognosis for development, led the University Genetics’ Clinic to benignly refer social services’ to help us locate supports. However, that was not what transpired: Instead, we were advised that the sole way to achieve necessary government funding for medial therapies and services would be for Samantha to live in an out of home medical placement. Natural families, the Ministry Represented stated, could not receive the level of needed support such as that provided to foster care. 

We were informed that if we wished to offer our child a chance at life, this was the “kindest thing to do”. Reeling from the dignosis that our daughter would likely not walk, talk, see, nor comprehend that we were her family (the hated phrase utilized to describe lack of development was “imbecile”), we were terrified and naively succumbed to “expert opinion”. 

In a nutshell, optimum care was not afforded our daughter. In fact, grave issues surfaced and although we repeatedly brought concerns forward to our caseworker, these were belittled and ignored. Years went by as we tried to learn our rights and responsibilities… No one would tell us the truth: The foster mother and caseworker indicated that there was a guardianship split from which the Ministry had the final say. We, our family, were legal guardians of our child; yet until our daughter lay in hospital dying this information was not revealed to us. 

You see, we had entered into an “Agreement” with Ministry all those years ago – which unlike an “Order”… our arrangement was strictly to achieve medical supports – as advised – and at no time ever was our case an intervention issue. Yet, we were treated as such… distanced from our child, siblings unable to see their sister and all parental rights erroneously transferred to the placement. The caseworker informed that she had difficulty locating placements for children less disabled than Samantha and advised us not to make waves. We later learned that we were “1 of 4 families” in the Province of Alberta who existed under the archaic Agreement. 

Following the death of our daughter, I began to seek records that I then knew we were entitled to obtain. I learned the most heart-breaking revelations. For instance, a Principal and Rehabiliation Aide at Samantha’s school witnessed the foster mother take hold of my daughter and shake her. The reason? Samantha had been sick, vomiting all day and a decision was made by authorities that she could not safely return to the placement on a school bus; that Samantha would need to be retrieved. The foster mother, they wrote, was so angry, denying illness, that she took Samantha and yelled, “STOP IT” as she shook her when she began to vomit. 

I discovered from past medical records even MORE sinister health concerns had emerged repeatedly… Samantha sustained 7 broken limbs, stitches, and various other injuries in the foster placement. Our little girl was first recognized having absence seizures by an RN on her 3rd birthday. 

Throughout the years, other specialists witnessed similar signs and recommended follow-up assessment for treatment to the foster mother – which the caseworker had knowledge of – yet no medical intervention was sought, nor were we the family and legal guardians ever informed. I had, at one point, even asked outright whether there was a possibility of seizures because statistical research indicated that 25% of individuals with the syndrome have a disorder. I requested that the information be shared with the pediatrician, but he was never told. I learned as well, that the caseworker, too, knew about the seizures and naively trusted that the foster placement would secure medical intervention and never followed up to ensure it had occurred. 

Twelve years after Samantha’s birth, at last, the Office of the Child Advocate in Alberta became involved. I credit Samantha’s escape from foster-care to this agency AND the fact that her file was removed from the Office which had been over-seeing decisions for nearly her entire life. Samantha came home and immediately flourished! She gained 10 pounds; which was 20% of her body mass having been only 50 pounds throughout the ages of 11- 13 in foster care. 

Within the summer months, I taught Samantha to toilet and she gained continence during daytime hours; so proud of herself having experienced wearing “big girl” panties for the first time in her life. 

Language also began to emerge… Samantha started learning words and with her brothers’ efforts each day, began to accurately say their names! Thirteen years of being non-verbal and suddenly Samantha was able to say words and very close approximations of phrases. “Good-morning!” She would greet her bus driver happily. The strides in development in all areas was extraordinary. Social-worker remarked that Samantha’s development had obviously been severely repressed. Teachers referred to Samantha as “A butterfly who emerged from her cocoon.”

Now watching Samantha on a daily basis, we, ourselves, suspected the presence of seizure activity – confirmed by educators – so pursued testing with neurology (EEG.) Our pediatrician even witnessed Samantha having an episode in the office! A second evaluation was to take place and treatment was to begin, however, within days of that office visit, our daughter suddenly took ill at school. A second EEG was scheduled for the very next day; I spoke with the hospital’s nurse and she advised we continue to monitor Samantha and the anesthesiologist would decide whether or not to proceed with sedation. 

In the early evening, our daughter did not respond to her name so we rushed to emergency where she was determined to be in cardiac arrest at the hospital. In hindsight, I don’t believe Samantha was merely resting, but was actually exhausted from having repeated seizures during sleep which caused the heart to stop functioning. 

Samantha passed on December 3rd 2006. Amendment to the Family Supports for Children with Disabilities (FSCD) legislation was effected retroactive to December 2006; which I was informed by FSCD, was because of Samantha.

The life and circumstances surrounding Samantha Lauren Martin caused me to challenge archaic laws inhibiting the rights of persons with disability & their families resulting in the establishment of: 

“Samantha’s Law” 

https://en.m.wikipedia.org/wiki/Samantha’s_Law

http://www.child.alberta.ca/home/527.cfm 

Section 2-3, Manual Amendments: Policy and Procedures in Family Centred Supports and Services: 

“The Family Support for Children with Disabilities Program to have separate legislation from that of child protection services.” 

Amendment, which, I am currently petitioning the Court to have the legislation formally named in tribute to Samantha, the child, from which amendment evolved:

http://www.petitiononlinecanada.com/petition/samanthas-law/67

While I appreciate that the Ministry refers to our history as “a learning experience” for them. For us, the absence of our child will forever hold an empty space in our hearts and lives that we must constantly strive to survive. The sole consolation that we may take is the hope that archaic perspectives towards individuals with disability may begin to change and with this – “Samantha’s Law” – other loving families, their children and constitutional rights will better protected in the future. 

Society appears to be more accepting of diversity, however, legislation to protect basic human rights of individuals with disability largely lags behind. And, enforcement of law that does exist, tends to fail our most vulnerable. We must strive to alter the past so that the future holds better promise of constitutional adherence to law. Enforcement must not only be for the general public, but also include members of Government Authority who breach legislation. Forcing families to relinquish custody and out of home placement of their loved one with medical diveristy is no different than the archaic practice of hiding persons with disability in institutions. 

Often, where no law exists, the Courts do have the ability to establish decisions based upon precedence set in neighbouring jurisdictions… This is our greatest hope for all: Recognition that our daughter’s life held significance as she continues to live on by aiding others in need. 

In a nutshell, this is our story, Samantha’s far too short life and death… My baby girl, loved so much that we let go and will always have to live with the cost of trust. While I cannot go back in time to change my family’s outcome, I can strive to help others in similar dire need, protect their rights to Family-Centred Care Practice. That is Samantha’s legacy of hope.

-VM

Samantha’s Law on Facebook:

https://m.facebook.com/SamanthasLaw/

Justice for Samantha Martin: 

https://m.facebook.com/groups/JusticeforSamanthaMartin/

The Samantha Martin Story: 

https://youtu.be/DqafFSA1s08 

#AlbertaPrimetime 2013 #SamanthasLaw 

Advertisements

These moms are building a forever home for their autistic children

February 1, 2019

https://www.washingtonpost.com/lifestyle/2019/01/29/faced-with-few-options-these-moms-are-building-home-their-adult-autistic-children/

These moms are building a forever home for their adult autistic children

Housing complex would integrate residents with special needs into the larger community

 

Susan Wallitsch, here with her son Frank, is working with other parents of developmentally disabled adults to build permanent housing for them. (Photo courtesy of Susan Wallitsch)

By Tara Bahrampour

January 29

Susan Wallitsch is the primary caregiver for her 27-year-old son Frank, who is autistic and functionally nonverbal. A few years ago, when she had a health crisis and was temporarily unable to care for him, the solutions she found were limited — and troubling.

She could look for a group home — but most have long waiting lists and would likely not accept Frank because he has behavior problems. She could apply for funding to put him in his own apartment with a 24-hour caregiver — but in that kind of isolated situation, the rate of abuse for adults with developmental disabilities is alarmingly high. Or, she was told, “you take him to the police station and you drop him off and you leave him.”

Those stark scenarios underlined the agonizing dilemma that parents of severely autistic children face: As they contemplate their own old age and mortality, they don’t know what will happen to the children they’ve spent their lives caring for.

Keep Reading

[This autistic boy’s classmates had never heard him speak. At graduation, he took the mic.]

In the case of Wallitsch, who is an attorney, the lack of better options spurred her to action. She and another attorney friend, Mary Anne Oemichen, also the mother of an autistic adult, began meeting at a cafe with several other parents of developmentally disabled adult children. Getting together each week over two years, they came up with a plan to build an apartment complex that would offer their children community and a place to grow old.

They took the idea, which they called Home Of Our Own, to a local affordable housing developer, Wisconsin Housing Preservation Corp., which agreed to kick in $500,000, secured an option on a six-acre parcel and retained architects to draw up a plan. They have applied for a low-income tax credit program, and the families are fundraising to try to gather another $500,000 toward the project’s estimated $8 million cost.

“There’s so much interest and so much demand for this type of housing,” said Mary Wright, WHPC’s president, who described the project as “a bit of an experiment.”

“If we can figure out a way to make this happen, we are more than happy to try to do this in other communities and I hope that nationally this can be replicated,” she said.

 

Architectural rendering of Home Of Our Own, which plans to integrate adults with developmental disabilities into the larger community. (Midwest Modern/Wisconsin Housing Preservation Corp.)

The need is vast and growing, said Kim Musheno, vice president of public policy for the Autism Society of America. In 2018, the CDC determined that about 1 in 59 children is diagnosed with autism spectrum disorder, and over the next decade, an estimated 500,000 of them will enter adulthood, she said, adding that nearly 424,000 are on waiting lists for residential services.

In the face of this, Musheno said, more parents around the country are starting their own initiatives.

“The federal and state governments are falling way short of the need for accessible, affordable residential options for people with autism and other developmental disabilities,” she said. “I like this project because the parents are working to ensure that the housing project is integrated in the community so that the residents are not isolated. Most people with autism and other disabilities do not want to live in institutional-like settings. They want self-determined lives just like everyone else.”

The first phase of the complex, to be built in rural New Glarus, Wis., would have 40 units, a quarter of which would be reserved for adults with developmental disabilities such as autism or cerebral palsy, who would live there with caregiver assistance. The rest would be affordable housing for people earning $22 per hour or less, who have limited housing options in the area.

The founding families insisted on several points: Home Of Our Own would be open to people with disabilities at any level of severity; income would not be a barrier; and it would be an integrated setting in which their children and others with disabilities would live in a community with people who do not have disabilities. The complex would have communal spaces, gardens and walking paths, and the founders envision a range of people, from young workers to retirees, living there.

“In the end, everybody wants the opportunity to be independent and to be social and to be part of a community,” said Oemichen, whose 25-year-old daughter Amy is functionally nonverbal.

 

Mary Anne Oemichen and Susan Wallitsch hope a new housing model will allow their children, Amy and Frank, shown here, to live independently. (Photo courtesy of Mary Anne Oemichen)

The adults with disabilities would pay rent, which will be scaled to their income (along with holding jobs, they also receive Social Security), and qualify for home care through Medicaid. But rather than being isolated in apartments with a caregiver and little oversight, they would live alongside neighbors who knew them and could speak up if anything seemed amiss.

The development might also incorporate special design features such as doubling up on drywall to accommodate residents who are sensitive to sound, installing blackout shades for those sensitive to light, or adding a safe room for caregivers who need to separate themselves from residents who become aggressive, Wright said.

[Bystanders were horrified. But my son has autism, and I was desperate.]

In March, the group will learn whether it got the tax credits. If so, they anticipate opening the facility by the fall of 2020.

 

Mary Anne Oemichen hopes her daughter Amy, who has autism, can live in an integrated community. (Photo courtesy of Mary Anne Oemichen)

“Part of our role will be to build the community and create opportunities for people to spend time together,” Wallitsch said, adding that her son is excited about the prospect. “To live where other people live, people closer to his own age, to make new friendships, to live somewhere other than where his mother and father live.”

Frank communicates by pointing to letters on a letter board and spelling words. Recently, listening to his family discussing the project, “He was really thrilled about it and he spelled: ‘SHOUT OUT,’” Wallitsch said.

Unsure whom that was directed toward, she asked if he meant it for his sister or his caregiver. It was neither of those. Frank returned to the letter board.

He spelled: “SHOUT OUT MOM.”