Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.

-Me

Thursday, May 31, 2007

Housing Coalition, Volume 2

The Housing Coalition received my letter on Friday. Attorney General Lori Swanson received my letter on Tuesday. I know this as I received signed delivery receipts from both.

And I anxiously await something to happen. Something. Anything.

I am still awaiting the name of my lawyer, and after a quick phone call to Minnesota Legal Services, I should be receiving said name either today or tomorrow.

My stomach has been in knots waiting for some response to my HUD complaint or my letters. Perhaps I am impatient, but I don’t believe these things should take all that long. I am forever on my own schedule.

In the meantime I am contemplating sending a second letter to the housing coalition concerning a different issue that arose (literally) yesterday.

I pull into my garage and notice rising waters. Ick.

What the hell? I think to myself. My garage is flooding!

So I call the resident caretaker, concerned primarily with Bob’s tools that are, well, sitting idly in said standing water. The caretaker’s response? “Oh, the garage flooded? Ya, it does that. It does that EVERY TIME it rains or thaws. Just don’t keep anything on the floor (thanks for telling me). The property management company knows about it but they choose not to do anything to correct the problem.” And then as I get off my cell, some kid calls down from the second floor at my grumbling frame: “Those garages flood EVERY TIME IT RAINS!”

So I signed a lease for a garage with a property management company that is AWARE of a defect in the building structure, and they fail to inform me of this? And regardless of the fact that I don’t have insurance on the things that are in my garage or my townhome, they were AWARE of this defect in structure and didn’t feel that I ought to know. What the hell is wrong with these people?

I think I will start with a maintenance request to fix the damaged structure that apparently floods every time it rains. Then I will follow with a letter that will less than thinly veil my frustration and anger with their obvious disregards for my rights as a consumer and tenant.

A**holes.

Tuesday, May 29, 2007

Four in Forty

Or rather, 3.98 in forty. That is, 3.98 miles in forty minutes. Seeing as how my most recent running goal was four miles in forty minutes, I believe that I have for the most part successfully achieved this goal. Four in forty.

Running is mine. Running is success. I know I will find success with persistence and dedication. And I do. It is predictable. It is joyous. It is mine.

There is something so beautiful about setting a fitness goal, about setting ANY goal, and then achieving that goal, surpassing that goal, and then setting a new goal. It lends an inner joy and sense of accomplishment that nothing else really does. It is beautiful. God gave me my beautiful body and I can use it to accomplish amazing things. Amazing.

So…..My next goal is 3 in 27. That is, three miles in 27 minutes.

The question now is not whether I will achieve that goal, but when I will write about achieving it.

Sunday, May 27, 2007

Rocks

I have had high speed internet (after a 9 month stint with dial-up) since May 23rd. One particular joy I have had with high speed internet is the opportunity to watch videos made by A.M. Baggs. She herself has autism and is nonverbal. Her point of view and her voice is amazing.

Friday, May 25, 2007

My New Place!




You'd think that with all the bitching I've been doing about my property management company that I'd hate my new place. That isn't the case at all. My place is gorgeous, and it is filled with other families that have young children, many with special needs.

The move-in was pretty mellow, well as mellow as a move-in can be. The movers took care of the move, obviously. Bob took care of the old-place cleaning (with a promise from me that he would get the deposit as payment). Sandis was at a playdate for the duration of the move. Gracie was under heel. And me? I unpacked EVERY SINGLE BOX the day of the move.

I'm one fabulous lady!

Here's a few pictures of our new abode.









Thursday, May 24, 2007

Voluntary Attorney???

Voluntary? As In Free?

Yeeehaaa!

You are now reading the prose of a "represented woman". And not just any "represented woman" but a woman who has "free" or rather "voluntary" representation.

I called the Minnesota Legal Services today and requested a voluntary attorney. Now I didn't have any idea if I would qualify for such services, as all I was told when given this number is that only certain types of cases qualify for this service.

Well, slap me silly (not really), but my "case" qualifies for a voluntary attorney. And I now have representation.

I mailed the letter I posted yesterday via certified mail w/ delivery receipt to the Housing Coalition President. I copied said letter along with an additional letter and sent it via certified mail w/ delivery receipt to Attorney General Lori Swanson. I then obtained an attorney.

And I'm feeling pretty fine about the whole damn thing.

I will be receiving a letter either today or tomorrow with my new attorney's name and I will be contacting them at the earliest on Tuesday and the latest on Wednesday.

And you know what? When the Housing Coalition decides to follow up with me concerning my four page law-ridden letter?

I'm going to give them the contact information of my lawyer.

*Happy Dance In The Corner Sarah*

Wednesday, May 23, 2007

Housing Coalition **** Off

So here is my letter to the Housing Coalition, and also CC:ed to Lori Swanson, Attorney General of Minnesota. Do you think I will get any results?

May 23, 2007

Attn: Housing Coalition President

RE: Reasonable Accommodations Requested Under the Fair Housing Act

It is with deep regret that I am forced to write this letter. I am a new tenant of "..". I signed my lease with the Housing Coalition on May 1, 2007. Shortly after signing my lease I followed up with Kris Lieser with a request for a reasonable accommodation requiring a change in Housing Coalition policy to help meet the needs of my disabled son, Sandis Rittmann, who has autism. My request was for a duplicate house key. I requested the duplicate house key to provide on occasion to Sandis’s PCA. Sandis has numerous appointments during the week at therapy to which his PCA transports him to, and he also has a personal care plan with ARISE Home Health Care listing goals to attain that include things like: personal safety, functional daily life skills, and reducing level one behaviors towards which Sandis and his PCA work to reach daily. Sandis qualifies for 14 hours per week of PCA services. Sandis’s PCA typically picks him up after school, transports him to his therapy appointments, and then transports him to his home where they together work on their goals and wait for my arrival home from work. We are unable to maintain this schedule without a duplicate key to provide to Sandis’s PCA on the days that I am not home when they arrive. This detracts from Sandis’s basic right to use and enjoy his dwelling and to work towards his basic functional daily skills goals, as well as his personal safety and aggressive behavior goals.

I initially spoke to Kris Lieser within a week of signing my lease (May 1st). I was told that I would have to provide proof of Sandis’s disability. I provided this proof in the application process when I provided proof of Sandis’s SSI monthly income. I was then told that I would have to provide proof of Sandis actually having a PCA from the Home Health Agency that provides the PCA. Kris was scornful in her conversation with me, informing me that by denying a duplicate key to my family would actually be doing my family a favor. In her words: “Imagine this Sarah, you have your duplicate key in your kitchen drawer and you have your friends over and one of your friends steals your keys and uses it to rob you later. We are saving you a lot of hassle.” I was remiss for words, as I wondered what kind of friends Kris imagined I had and associated with. I also mentioned to Kris the desire to put up a magnetic door alarm. Kris responded with: “As long as it doesn’t alter the door. We had a family that put up a door alarm that altered the door and some time later the police got involved and had to kick the door in.” Again, I was remiss for words, wondering how often Kris imagined I was in contact with the police. After having some exposure to my criminal records during the application process she should know I have no criminal history! To accommodate Kris’s request for proof from my home health agency verifying that Sandis does indeed have a PCA the agency faxed a letter outlining that Sandis does indeed receive PCA services, the name of his current PCA, and that all employees of Arise Home Health Care have a completed a background study conducted by the State of Minnesota prior to their employment. Kris indicated to me that receipt of this documentation would not guarantee receipt of a duplicate key, and even foreshadowed the event to come telling me not to expect to be approved for a duplicate key as it is not their policy to make exceptions to their duplicate key policy for any reason and the request would more than likely be denied. I followed through, despite her obvious discouragement and callous attitude, and submitted the requested information.

On May 23, 2007 I called Kris Lieser to find out the status of the request for my reasonable accommodation for a duplicate house key to provide for Sandis’s PCA on days she would need them. Kris rudely informed me that the request was denied by the board. I informed Kris that this was failing to provide a reasonable accommodation for a tenant with a disability and she responded that this was not a request based on a disability. Kris also had informed me in the initial conversation soon after lease signing that I should not be leaving my child alone at home with a PCA.

I believe the Housing Coalition has violated the Reasonable Accommodations under the Fair Housing Act by denying this request. I have included a 12 page document that thoroughly explains this act in respect to Reasonable Accommodations and I have underlined what is relevant to this request. I will here outline my reasoning for each instance:

Page 1: “ One type of disability discrimination prohibited by the Act is the refusal to make reasonable accommodations in rules, policies, practices, or services when such accommodations may be necessary to afford a person with a disability the equal opportunity to use and enjoy a dwelling.”

Sandis is being denied the right to use and enjoy his dwelling as he is unable to pursue his therapeutic goals with his PCA during the hours that I am at work at his home, even though his PCA is fully qualified to care for Sandis and that is what she is employed to do. She is employed to help care for Sandis in his home and she is unable to do this during the hours that I am at work as she has no entryway into the home.

Page 2: “The Act also makes it unlawful for any person to refuse “to make reasonable accommodations in rules, policies, practices or services, when such accommodations may be necessary to afford persons with disabilities equal opportunity to use and enjoy a dwelling…:”

While many children Sandis’s age are able to enjoy an after school activity, Sandis’s afternoons are devoted to learning basic functional and personal safety skills in the home setting. By denying the duplicate key to be provided on the occasions when I can not be at home (when I am at work) you are denying Sandis’s basic right to learn daily life, functional, and safety skills.

Page 2: “Any person or entity engaging in prohibited conduct - I.e. refusing to make reasonable accommodations in rules, policies, practices, or services when such accommodations may be necessary to afford a person with a disability an equal opportunity to use and enjoy a dwelling may be held liable unless they fall within an exception to the Act’s coverage.”

From the law that I have read, the Housing Coalition is completely held accountable for providing reasonable accommodations and is not exempt from providing this reasonable accommodation that I have requested.

Page 2: “ The Act defines a person with a disability to include (1) individuals with a physical or mental impairment that substantially limits one or more major life activities.; (2) individuals who are regarded as having such an impairment; and (2) individuals wit a record of such impairment.”

“The term physical or mental impairment includes but is not limited to such diseases and conditions as: …autism…”

“The term major life activity means those activities that are of central importance to daily life such as:…..caring for oneself, learning…”

As is outlined in the law, Sandis clearly qualifies as having a disability. Autism is even specifically stated as a condition that qualifies as a disability in the law. The things that Sandis’s home based PCA services addressed fall neatly into caring for oneself and learning.

Page 4: “ A reasonable accommodation is a change, exception, or adjustment to a rule, policy, practice, or service that may be necessary for a person with a disability to have an equal opportunity to use and enjoy a dwelling…..The Act makes it unlawful to refuse to make reasonable accommodations to rules, policies, practices, or services when such accommodations may be necessary to afford persons with disabilities an equal opportunity to enjoy a dwelling”

The Housing Coalition is by law denying my son’s right to home therapies in his home, and denying my son’s right to “use and enjoy” his dwelling by denying the issuance of a duplicate key to be provided for his PCA on those days that I am unavailable to be at home so home programming can be pursued.

Page 5: “ “A request for a reasonable accommodation may be denied if providing the accommodation is not reasonable - I.e. it would impose an undue financial and administrative burden on the housing provider or would fundamentally alter the nature of the provider’s operations.”


I find it hard to believe that issuing one duplicate key will cause either financial or administrative burden.
It is easier to believe that the Housing Coalition is unwilling to accommodate a request for a reasonable accommodation for a tenant with a well documented disability and well documented need for the accommodation.

“When a housing provider refuses a requested accommodation because it is not reasonable, the provider should discuss with the requester whether there is an alternative accommodation that would effectively address the requester’s disability-related needs without a fundamental alteration to the provider’s operations and without imposing an undue financial and administrative burden.”

I was not informed directly of the denial of the request, although I left a message. I was forced to call and follow up myself with Kris Lieser. While informed of the denial, no alternative accommodations were recommended and when I requested to be informed of the appeal process, I was informed that I could not appeal the decision made by the board.

“However, providers should be aware that persons with disabilities typically have the most accurate knowledge about the functional limitations posed by their disability, and an individual is not obligated to accept an alternative accommodation suggested by the provider if she believes it will not meet her needs and her preferred accommodation is reasonable.”

I feel as though the Housing Coalition has mocked and belittled my request from the beginning, negating the request before it even made it to the board. I have been faced with discrimination due to mis-education concerning autism and basic presumptions about my person without assuming I understand the functional limitations of my son’s autism more than they.

Page 6: “Courts have ruled that the Act may require a housing provider to grant a reasonable accommodation that involves cost, so long as the reasonable accommodation does not pose an undue financial and administrative burden and the requested accommodation does not constitute a fundamental alteration of the provider’s operations.”

The cost incurred providing a duplicate key is minimal and more than reasonable.

“Housing providers may not require persons with disabilities to pay extra fees or deposits as a condition of receiving a reasonable accommodation”

Upon receipt of key as a reasonable accommodation, I shall not have to pay for it.

Page 7: “Under the Act, a resident or an applicant for housing makes a reasonable accommodation request whenever she makes it clear to the housing provider that she is requesting an exception, change, or adjustment to a rule, policy, practice or service because of her disability. She should explain what type of accommodation she is requesting and if the need for the accommodation is not readily apparent or known to the provider, explain the relationship between the requested accommodation and her disability.”

I initially requested orally this accommodation with Kris Lieser the beginning of May and I have provided adequate documentation outlining the need for such accommodation.

“The request can be made by a family member or someone else who is acting on her behalf.”

I requested on behalf of my son.

Page 8: “A provider has an obligation to provide prompt responses to reasonable accommodation requests. An undue delay in responding to a reasonable accommodation request may be deemed to be a failure to provide a reasonable accommodation.”

Despite requesting the accommodation in early May (first week) my denial was not processed until May 23rd and I was given no process to appeal the decision.

Page 10: “(1) is necessary to verify that the person meets the Act’s definition of disability….(2) describes the needed accommodation and (3) shows the relationship between the person’s disability and the need for the requested accommodation”

I have shown through documentation of Sandis’s SSI income and through the letter from ARISE that Sandis qualifies as having a disability and how the reasonable accommodation ties into his disability.


As I have clearly outlined in this letter, The Housing Coalition’s denial of my request for a duplicate key to provide on occasion (when needed) to Sandis’s PCA so she can provide home services to help Sandis learn basic life functional and safety skills in the home setting denies my son the opportunity to use and enjoy his home.

I have filed a discrimination complaint with HUD on May 23, 2007 on the basis of Failure to Provide Reasonable Accommodations. I fully expect this matter to be resolved appropriately before HUD has the opportunity to address this matter. I am perplexed at the clear denial of rights to my son and my family as a family that regularly deals with special needs of children and is choosing the most appropriate way to request accommodations to thrive and use/enjoy their new home.

I am also Copying this letter to Lori Swanson, Attorney General of Minnesota.

Thank you for your time and consideration in this matter and my concerns,



Sarah

Saturday, May 19, 2007

We're Moving!

Finally the day has come! We are moving...........today!

So it is 7:33am and we anxiously await the 8am movers.

Yippeee!

Friday, May 18, 2007

Obstructive Hypertrophic Cardiomyopathy

This is what Sandis’s biological father has.

It is hereditary.

Sandis will be following up with a cardiologist in the next few months to see if he has it, as well. Assuming things go well and his heart looks fabulous, he will follow up with a cardiologist annually or bi-annually until he hits puberty. Then he will follow up with a cardiologist annually until he is in his late twenties to ensure that he is not developing this condition.

And, of course, I don’t think this is fair.

I’m not really grieving, it could be nothing, and he could be fine.

But I’m not exactly jumping for joy either.

Thursday, May 17, 2007

So You Love Jack Sparrow?



It must be something about Jack's in this house, because not only do we LOVE Captain Sparrow, we also really REALLY really REALLY love Jack White!

(me ESPECIALLY is loving the Jack White!)

Building Myself Up

Take all of the many things you do in a day, in a week, in a month, compile them together and see what type of list you get.

I am a:

Mom, Nanny, Technical Writer, Graphic Illustrator, Chauffeur, PCA, Butt-Wiper (my favorite task ever!), Receptionist, Concierge, Appointment Setter, Janitor, Referee, Mediator, Lawyer (minus the schooling), Nurse, Message-Taker, Filer, Medical Records, Clerk, Chef, Waitress, Sister, Daughter, Girlfriend, Financial Analyst, Financial Adviser,
Budget Analyst, Fund Executor, Account Manager, Sales Rep., Marketing Rep., Forecaster, Juggler, Wrestler, Circus Act, Motivational Speaker, Packer, Mover, Correspondence Coordinator, Insurance Claims Rep., Disability Advocate, Massage Therapist

The list goes on and on. And really, I amaze myself with the extent of what I can accomplish in a day, a week, a month.

Do you think I can get away with putting all of this on my resume? (hehe)

Sometimes I wonder why I was so blessed to have awesome children with such specific and detailed needs.

Then I realize that it really is no wonder at all. I have every single tool I need (not to mention personality trait) to aid them on their paths to success. I am so lucky to have them. But they are pretty lucky to have me, too.

(I’ve taken today as an opportunity to build myself up. I hope that each person that reads this at least privately takes an opportunity to build themselves up, as well. We have every opportunity in our life to not be good enough. Well today, I’m giving you license to be better than good enough, to be more than enough, to be perfectly suited for your own unique challenges. Go on, I dare you!)

Tuesday, May 15, 2007

Messages From the Past

Sometimes things just don’t go the way you expect. Sometimes what you least expect happens in a way that you, well, least expect it to.

Often I have touched upon the mortality of us all. Our ultimate mortality. The fact that eventually all of us will die. It seems such a hard truth to keep, such a hard truth to believe. Why is that? Why am I shocked when death colors my atmosphere or fringes the edges of my vision?

I had a message on my cell phone this morning. A message from my son’s father left at around midnight his time. He asked me to call him back and said it was important, and I’m wondering what could be so important that he calls me at midnight. What could be so important after eight years of limited contact at best?

Sandis’s biological father is ill. Open heart surgery and four heart attacks ill. Not what I expected. For whatever it is, I have no idea what I expected.

He will be having open heart surgery in the next month in either Boston or Minnesota. (He lives in New York). How do I feel about this? I’d be lying if I said I wasn’t sad, but I am sad for reasons that have very little to do with the short relationship we had many many years ago and everything to do with my Sandis. My beautiful boy who I do not want to process this. My beautiful boy that I hope death will never touch. My beautiful boy who does not know and may never meet this “dad”.

I am expecting another call from Sandis’s biological father this evening, but I have to say…….I’m not necessarily looking forward to this journey. Not one bit.

Monday, May 14, 2007

I Need Your Help

I’m looking for published studies/articles which indicate a decrease in hypoglycemic episodes for people who are using continuous glucose monitors.

I am appealing my insurance’s denial of coverage for the real time glucose monitor on the basis that there are no long term controlled studies in the peer reviewed medical literature indicating a better outcome than standard testing. I would like to appeal this as I am looking looking for a better outcome not with a lower a1c, but by fewer hypoglycemic episodes.

So bring on the links! Please!

Thursday, May 10, 2007

What Just Happened?

I have no idea what the heck just happened. But somehow, someway, I managed to get into an argument with my new property management company.

It all started because I wanted a set of duplicate keys. There are a couple of reasons for this. The first is because I just want a spare set. I don’t want to be in a panic calling property management if I ever lose my keys. I probably lose my keys perhaps once every 2 to 3 years. Not a big thing, but super stressful if you don’t have a spare set. The second reason is I would like to be able to give that duplicate set of keys on occasion to Sandis’s PCA (whomever that may be) should she happen to be at home with him when I am not at home and needs to take him out to either therapy or some other community-based activity. I’d like her to be able to lock the door. Also, I’d like her to be able to pick Sandis up from school on occasion and bring him home even if I am not yet home. It just eases things for me. She wouldn’t always have the key, but she would for these occasions.

They told me no. The gal at the property management company (I’m seething at the no at this time, threatening to bring in a disability advocate to help pave my way on this) asks me to think for a minute on why it is their policy to not give duplicate keys.

“Imagine this, Sarah. You have your friends over, and one of your friends steals your duplicate keys from your kitchen drawer/purse/wherever and uses it to rob you later. The liability issues for us are too large to issue duplicate keys.”

Wait. Stop.

What just happened here? What kind of people do you think I hang out with? What kind of people do you deal with EVERY DAY that live where I am moving?

Oh. Shit.

On to the door alarm and small sign. I’d like to put up a very small unobtrusive sign in our doorway that simply says: “A child with autism lives here.” It won’t be a blaring tacky testament, just a tool to help raise our new community’s awareness about my family and my son. Hopefully it will help promote safety as should he ever “get out” and “wander” hopefully someone will remember seeing this sign and cart him on back safe, rather than unsafe and still wandering.

My property management’s response?

“Well, you know, you shouldn’t let your children wander alone as it is.”

What?

What?

Well, I tell her, I don’t let my child wander, and as it is, I will be putting up a door alarm to help make sure that when I understand he is inside, he stays inside.

She interrupts me: “Does the door alarm alter the door? Because we had a family that installed a door alarm that altered the door and somehow the police got involved and had to kick down the door. It was a big mess.”

I am defeated. I feel certain that I have somehow lightbeamed into an alternate reality. I mutter/whisper/squeak: “Police? What?”

(And no, the door alarm is magnetic and does not alter the door).

So, You tell me.

What the hell just happened?

Tuesday, May 08, 2007

Congratulations Mom!

My mom has been in university pursuing a degree for 10 years. She has changed majors a few times, and she eventually found her niche in nursing.

My mom graduated on May 6th with a Bachelors of Science in Nursing. She not only graduated, she also graduated from University as a member of an exclusive nursing honor society.

My mom went to school full time while she worked full time. She juggled an immense workload. She has also been a diabetic for nearly 44 years.

My Mom is AWESOME!

Sunday, May 06, 2007

How May I Help?

When faced with an opportunity to judge families who are clearly struggling, I encourage you to offer your help and make an effort to assist. I encourage you to carry the burden of social responsibility on your own shoulders. I encourage you to build fellow families up rather than find reasons to tear them down.

Whether you are a teen, a young mom, a parent of a teen, or a retired adult with grown children, I beg of you to take the road less travelled and retire from the judgement that is so easy to slip into.

Please acknowledge what you cannot know and assume humility in such a way that you may offer your assistance without offering counsel. Please offer your help in a way that is useful and immediately felt.

And should you feel that the situation is such that a voice must be raised, I ask you to say this only: "I can see that you are having trouble, is there any way I can help you?"

Because our social responsibilities are not only to our families and friends, but also to one another, regardless of whether we have previously crossed paths.

That is what makes humanity, well, human.

Wednesday, May 02, 2007

Seeking Our Adventures

So we set off for Denver tomorrow to celebrate my mum's graduation.

Congratulations Mom!

My mom is so awesome, she has been working for this degree for so long and is graduating 11 days before her 55th birthday. She is an awesome example of life that you never stop living!

We are so excited for our adventure! So for all of you.....Peace until our return from the land of Mountains and Family.

Sandis has been busy working on constructing some maps to share with all of you after our trip!