SYF_News(Winter08-09_v 1i 2)

SYF NEWS

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Quarterly Newsletter

in this issue

Cover StoriesThe New Administra-tion On DisabilityWill We Keep the Free-dom to Work?

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Opinion/EditorialAdaptive Recreation Programs May Get the Ax

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ActivismBrooke’s Speech to the LegislatureSpeaking Out on Cuts to “Optional” Services

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Spotlight: EmploymentInterviews 4

Writer’s CornerPoem — Lost Soul 6

YAC-AZ Holiday Recruitment Event

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Community Calendar 8

Wil l We Keep the Freedom to Work? By Chris Smith

With Janet Napolitano assuming the position of U.S. Secretary of Homeland Security under Pres. Barack Obama’s administration, Republican Janice K. Brewer became Arizona’s new governor. Jane D. Hull, governor from 1997-2003, was both the last Repubican to hold that office and the last governor to replace an incumbent vacating mid-term. It is not every day that a Secretary of State becomes a governor. The question now is whether or not Brewer is up to the challenge. Because of the state’s severe budget deficit, many people with disabilities are worried about the elimination of vital programs. One program in particular that has many workers with disabilities concerned is the Freedom to Work Program (www.ahcccs.state.az.us/SERVICES/Programs/FreedomToWork.asp). If cut, it would be a terrible loss of income for not only workers with disabilities but for the state as a whole. Freedom to Work, established in 2001 by state legislators, gives many people the opportunity to work and become self-sufficient by allowing them to buy into the AHCCCS program, making their health insurance affordable. For some this also means no

New PresidentPresident Barack Obama New Governor

AZ Governor Jan Brewer

The New Administration On Disability By George Garcia

Nearly two million people braved the wintery chill in Washington, DC, to witness what most people considered an historic event: the inauguration of America’s first African-American president. Born to a Kenyan father and a mother from Kansas, President Barack Obama overcame racial discrimination to become president of the United States in a landslide victory over Senator John McCain of Arizona.

Relatively unknown, President Obama ran on a campaign of hope and change. His message resonated throughout the United States, where an economic collapse and a war with no exit strategy have caused people to question the policies of the Bush administration.

The election of President Obama has brought about a sense of citizen participation in democracy. People feel as if they have a voice that is now heard in Washington, DC. The question is: Does President Obama also hear people with disabilities?

According to the presidential agenda, the president believes people with disabilities must be empowered to participate as equal citizens of the

change

(continued on page 6) (continued on page 8)

SYF NEWS│WINTER 2008/2009 — 2 —

Adaptive Recreation Programs May Get the AxBy Tim Hults

Phoenix is feel-ing the effects of a declining hous-ing market and a downturn in the economy. It has proposed many cuts in order to balance the budget.

One of the proposed cuts to the Parks and Recreation bud-get would be a huge loss for people with disabilities. The city manager plans to elimi-nate supervised youth sports programming and recreation programming provided through the Adaptive Recreation Ser-vices: Daring Adventures and River Rampage.

Designed exclusively for teens and adults with disabilities and special needs, Daring Adven-tures gives them a chance to ex-perience something they might never get a chance to do – hik-ing, skiing, camping cycling, kayaking and more. With River Rampage, participants can raft down the San Juan River.

To quote Mandy H., a River Rampage Participant, “I have cerebral palsy; I have a wheel-chair. I learned that people’s differences or backgrounds don’t matter when you’re out in the middle of nowhere. Every-one is on equal ground. I would like to say those were the best seven days of my life.”

The nation’s natural environ-ment is the birthright of all citizens, but too often it is re-served only for those who can reach it on foot. In the fall of

1991, the Phoenix Parks and Recreation Depart-ment, with additional support from River of Dreams, a non-profit or-ganization, co-sponsored

the first National Park Service-sanctioned Grand Canyon raft trips for people facing signifi-cant disabilities. This project has brought the Canyon to life for hundreds of outdoor enthu-siasts who previously were ex-cluded from commercial river trips. Their challenges have in-cluded cancer, cerebral palsy, paraplegia, quadriplegia, se-vere closed head injury, spina bifida, post polio syndrome, neurological disorders, arthri-tis, multiple sclerosis, cogni-tive disabilities, and visual and hearing loss.

I was born with epilepsy, sometimes experiencing three seizures a day. Having a dis-ability can be very isolating. I was invited to experience River Rampage in 1994. It was the best week of my life. Since then, I have participated in hiking, kayaking, cycling, backpack-ing, and camping programs. I don’t know what I would do without them.

We urge our city managers to save these valuable programs which have brought so much joy and hope to people with dis-abilities.

opinion /editorial

To donate to River of Dreams , go to http://www.river-of-dreams.org/donationform.htm. Thank you for your support!

Brooke’s Speech: 1-29-09 AZ Legislative Budget Hearing

Good morning! My name is Brooke Brown. The main services I receive through DDD are hours for personal care attendants and physical therapy, along with insurance coverage for my wheelchair, Baclofen pump and other medical expenses. One day I hope to become physically strong and flexible enough to do the majority of my personal care independently, but I cannot succeed in that goal alone. Right now, I don’t get all the therapy I need because I am only able to find a therapist who can work with me for one hour a week. Yet, I am blessed with caregivers, like Chelsea, who is supporting me in my efforts today. Not only does she ensure that all my personal care is done and I am able to keep my obligations for work etc., but she understands my goal for independence and is willing to help me find creative ways to accomplish it. If my DDD services were cut or lost completely, that would leave my care solely up to my parents who are wonderful people, but they’re getting older now and don’t have the strength or energy to help me do all the necessary things in order for me to reach my full potential in life, no matter how much they want to. I know I have a purpose to fulfill in this world and I hope you can now understand how vital my DDD services are to discovering that purpose. When you have challenges like I and many in this room do, it takes a team to accomplish any goal.

I thank you, along with the Governor’s Council on Developmental Disabilities, for being a part of our team in the continuing fight to keep these, life sustaining services completely in tact.

SYF NEWS│WINTER 2008/2009— 3 —

Programs that support people with developmental disabilities such as the Division of Develop-mental Disabilities (DDD) and other vital services are on the chopping block as “optional ser-vices”. Although they can be seen as “optional” on paper, they are necessary for countless individu-als with disabilities to survive.

On January 29th, the Gover-nor’s Council on Developmen-tal Disabilities (GCDD) asked several YAC-AZ members to ad-dress group of legislators who were holding a budget hear-ing open to the public. Zak and I were two of the speakers (see Brooke’s speech, inset opposite page) and our words must have struck a chord with many people because GCDD invited both of us to address the Democratic legislative press conference the following Monday. The appro-priations committee wanted to put a face on the critical situation at hand to support their opposi-tion to the budget cuts for DDD services. They believe there is a better way to respond to budget shortfalls than to cut services to an already underserved popula-tion.

However, the Re-

publicans disagree. The Republi-can legislative budget was passed early Saturday morning and went on to be signed by Governor Brew-er. We feel that the budget cuts are a grave mistake as they will negatively affect so many people with disabilities. For instance, there will

be many people who can no lon-ger be active because funding for their durable medical goods will be cut and allocated elsewhere.

I had spoken publicly before but this was a new experience. My fear was that the television stations would downplay who we are as people and exaggerate our

helplessness. However, to my sur-prise, Channel 3 and Channel 10 (see box below for links to news-clips) hit the nail on the head. They helped viewers understand that individuals with disabilities want to be productive members of society, but they need support to do so.

As I told Steve Krafft from Channel 10, “I’m not politi-cal at all, but this is my life. I hope they [leg-islators] can un-derstand that now.” This ex-perience taught

me one valuable lesson among many – some politicians have their hearts in the right place. After the press conference, Zak and I spent a few minutes with Kyrsten Sinema, a representa-tive from District 15. I was very impressed with and thankful

for her involvement in our legis-lature. She has been in the social work field and truly understands what we are up against.

I still don’t want to be active in the political arena, but because I now know that there are people like Kyrsten, I feel more encour-aged to advocate for the issues that will have an impact on my life and well-being. If I can make the people who have the power to control my support services lis-ten to me while speaking with a computerized voice, none of my peers in the disabled community should ever be afraid to chase their dreams while speaking their minds or to have a voice.

to view newsclips, go to: channel 10

http://www.myfoxphoenix.com/dpp/news/politics/reaction_state_budget

channel 3http://www.azfamily.com/video/geaz-index.html?nvid=327954&shu=1indexhtml?nvid=327954&shu=1

Zak with Krysten Sinema (center) and Brooke (right). Upper right photo: Zak with members of the Democratic Legislature.

Speaking Out on Cuts To “Optional” Services By Brooke Brown & Zak Khazanovich

activism


spotlight:employment

“For decades, the abundance of wealth generated by free, hard-working Americans has allowed government to remain in the habit of growing and, in recent years, to grow even more rapidly. But today, neither prudence nor our Constitu-tion will allow this to continue in our state. We have all been seated to preside over that rarest of politi-cal happenings: our government is going to get smaller.”

With that statement in her in-augural address, Governor Jan Brewer shared her solution to the current Arizona budget deficit. Facing a $1.6 billion deficit that is only projected to get bigger without immediate action by the Arizona Legislature, Governor

Jan Brewer believes the solution to shoring up the budget deficit is to reduce the size of government.

So far, no program or state ser-vice seems to be protected in re-gards to budget cuts. Of particular concern to people in the disability community is the state’s Freedom to Work program. The program allows people with disabilities who qualify for Arizona Health Care Cost Containment System (AHCCCS) or Arizona Long-Term-Care System (ALTCS) to buy into the system while being gainfully employed. Without such a program, anybody with a dis-ability who uses AHCCCS or AL-TCS would be in danger of losing vital healthcare coverage if they

make more than $867 a month in earned income.

The governor acknowledges that a reduction in state spending will have an impact on “people’s lives and livelihoods.” When it comes to this program, approximately 1049 people would be affected if cut. While the statistic may be daunting, it does not clearly portray the effect that such a cut would have on an individual. With the following interviews, we get a glimpse at what Freedom to Work means to two individuals who have utilized the program to pursue their employment goals.

Real Life Perspectives of the Freedom to Work Program By George Garcia

Interviews withDon Price: As the Early Intervention Coordi-nator at Arizona Bridge to Independent Living (ABIL), Mr. Price visits area rehabilitation fa-cilities and works with people who are newly dis-abled and their families.

Fernando Cruz: As a Re-integration Pro-gram Coordinator, Mr. Cruz helps individuals transition out of a nursing facility and into their own or an assisted living home. Mr. Cruz also assesses other needed supports and refers them to the appropriate program at ABIL.

Q: What type of disability do you have?DP: I have a spinal cord injury I sustained in a diving accident when I was 18 years old. I was swimming with friends at a small lake in Wiscon-sin and hit my head on the sandy bottom when diving in. My neck injury resulted in paralysis. I have been a person with quadriplegia for 26 years now.

FC: I was diagnosed with Juvenal Rheuma-toid Arthritis (JRA) when I was eight years old, which rendered me a wheelchair user when I was 47 years old. In 1993, I developed Type 2 Diabetes, which led to (above-knee ) amputa-tions of both my legs performed two years apart, 1995-1997.

Q: How does your disability have an impact on your health?DP: People with spinal cord injuries are prone to secondary conditions such as: skin breakdown, urinary tract infections and pneumonia. There is also a higher rate of depression and alcohol-ism amongst the spinal cord injured population. However, these are mostly preventable conditions, so I take care of myself and plan to live a “nor-mal” life expectancy.

FC: My arthritis limits my physical mobility and causes physical pain that is somewhat un-der control with medication and the Diabetes has caused both legs to be amputated and I am now a dependent of insulin.

(continued next page)

Don Price Fernando Cruz

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Don PriceAs the Early Intervention Coordinator at Arizona Bridge to Independent Living (ABIL), Don Price visits area rehabilitation facilities and works with people who are newly dis-abled and their families. Fernando CruzAs a Re-integration Program Coordinator, Fernando Cruz assists individuals in Phoe-nix and the West Valley who are transitioning out of nursing homes to either their own homes or to assisted living homes. Beyond helping to plan their move, Mr. Cruz also as-sesses other supports needed and refers them to the appropriate program at ABIL. Q: What type of disability do you have?

Q: How has Freedom to Work affected your life?DP: The Freedom to Work program has greatly enhanced my life by allowing me to work in a job I love. Prior to this program I had the disincen-tive of losing my attendant care and health cover-age once I started earning a living wage, so I did not work. With the Freedom to Work program I am able to earn a living, keep my attendant care and pay into the system through taxes and fees. It’s a definite win-win program for all involved.

FC: Well, the program has given me a sense of ownership in society. I am contributing to it in many ways; by allowing me to earn an income, I pay taxes, I pay a premium to AHCCCS for my medical services, it allows me to give back to the disabled community. I am a first time home owner and most important of all I am my own person, I am an Independent Person.

Q: Does Freedom to Work help or hurt the Independent Living movement?DP: Freedom to Work furthers the IL movement because it provides another option/choice for people with disabilities. Holding a job allows people the dignity of becoming productive mem-bers of the community, as well as the pride of ac-complishment and self-determination. Given the appropriate tools, such as this program, people with disabilities can be employed just like any-body else.

FC: I think I might have answered this question already, but let me explain even more. First of all, this is one of the ultimate goals for people with disabilities – being able to go work, earn an income and pay into the system for the services. Without it, no matter what, we would still need the service (ALTCS). Let us work and pay back into the system instead of just taking and taking and not giving back. In my case it would cost AHCCCS/ALTCS twice as much for me to be in a nursing home than it does to live in my own home with attendant services provided there. So, it HELPS the independent living movement!

Q: How would your life change if the Freedom to Work program were to be cut?DP: I am concerned because if this program is cut I’m not sure whether I would be able to continue working. If my attendant care coverage were cut I could not afford to work and pay for care out-of-pocket. Without proper attendant care I could not get out of bed each morning and therefore would be unable to hold down a job. I truly hope I do not have to find out what would happen.

FC: It would be terrible! I would lose everything I’ve worked hard for: my home, everything I have in that home, and my education would all be for nothing. This is why I went to school – to earn my MSW so that I could do what I have done. If the Freedom to Work program were to be cut, I might have to go back into a nursing home and become more of a burden on the State Of Arizona than a contributor to the State of Arizona.

Q: What advice would you give youth with disabilities?DP: I think it’s important to realize that every person you meet has their own difficulties in life, whether they have a visible disability or not. Find things you’re good at and focus on those things. Try to be comfortable with who you are because your self-confidence will show and you will proj-ect positive energy and attract good things into your life. Be yourself, because you are worthy!

FC: As people with disabilities, we have more to lose than anyone else because we are dependent on so many services that we can’t afford to pay for ourselves. So, get involved in the IL move-ment and stay in school, because no one can take a good education away from you. Don’t let this happen.

Brooke Brown, Editor & Staff WriterLiliana Flores, Staff WriterGeorge Garcia, Staff WriterKatie Griffith, Staff Writer

Tim Hults, Photographer & Staff WriterChris Smith, Staff WriterZakhary Khazanovich, Staff Writer

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(Interviews — continued from page 4)


Lost Soul

Looking for hopeI wander on this beautiful earthI’m a lost soul trying to find dignity againYes, lost in the ways of my heritageI strive to find a way to my own peaceWandering the earth, feeling the sun warm meI stand on firm groundFeeling the impulse to change somethingTo cash in my soul for a life not yet mineAnd I wonderI dream of what could beAs I take what belongs to meHolding the power to change livesWaiting for life to change meI’m a lost soulTrying to change what can’t beInto what is meI’m a can’t beThat has always beenStrong, steady, and firmI’m breaking under life’s pressuresTrying to keep myself wholePiecing myself together againAs if life made me crack

I travel through time and spaceWaiting for the graceTo graft itself in my heartThis is my artAs I create myself a newWith each piece I doHoping time and spaceWill capture the beauty and graceOf a lost soulPlaced into a broken bodyTo turn can’t be Into what will beAs if life made me crackI travel through time and spaceWaiting for the graceTo graft itself in my heartThis is my artAs I create myself a newWith each piece I doHoping time and spaceWill capture the beauty and graceOf a lost soulPlaced into a broken bodyTo turn can’t be Into what will be

Poem ~ Lost SoulBy Zakhary Khazanovich

writer’s corner

United States. To achieve this, the administration has laid out a four-part plan:

1 People with disabilities must be provided the educational

opportunities needed to succeed. This will be achieved by fully funding the Individuals with Disabilities Education Act, supporting early intervention for children with disabilities and universal screening, improving college opportunities for high school graduates with disabilities, as well as making college more affordable.

2 The president plans to end discrimination and promote

equal opportunity by restoring

the Americans with Disabilities Act, as well as increasing funding for enforcement. The president also plans to provide affordable and accessible health care for all and improve mental health care.

3 The employment rate of people with disabilities

will be increased by requiring federal agencies, as well as its contractors to hire people with disabilities. For the private sector, the administration plans to provide employers with resources to provide accommodations for people with disabilities.

4 The president supports independent and community-

based living for people with

disabilities. This will be achieved by enforcing the Community Choice Act which allows people with disabilities to choose to live in their communities rather than having to live in a nursing home or an institution.

The goals set out by the Obama administration are meant to provide people with disabilities the opportunity to become equal and productive members of society. However, it is up to the private citizen to make sure our elected officials do as they promised. To find out more about the president’s goals go to http://www.whitehouse.gov/agenda/disabilities.

(New Administration on Disability — continued from page 1)


First Annual YAC-AZ Holiday Recruitment Drive By Kari McCutchen & Katie Griffith

Planning our first annual YAC-AZ Holiday Recruitment Drive on December 13th was a lot of fun, but also a lot of work. Before preparations could really begin, all of the YAC-AZ members participated in fundraising to cover costs for food and decorations by selling Entertainment books.

Katie was in charge of the planning committee and never knew how much work putting on such an event could be until she started planning and hosting this one. The hardest thing about the planning for Katie was finding nice decorations for the recruitment drive that were within our budget. This was a good experience for her because it improved her budgeting skills and helped her realize how much things actually cost.

After the hard work of calling different companies to find the best food at the most reasonable price, purchasing supplies to make decorations, and setting up, we both thought it was a successful event. It felt so good that all our efforts paid off and everyone enjoyed it. By Kari’s guess, there were about forty people in attendance including a number of new faces. For entertainment there was music and games like “how many Hershey Kisses are in the jar?”

According to Katie, however, the best part was the White Elephant gift exchange in which she won the battle for the ballerina snow globe. This first annual YAC-AZ Holiday Recruitment Drive was definitely the beginning of a beautiful tradition!

Pennsylvania Youth Leadership (PYLN) Monthly Conference Calls

The PYLN is a team of youth leaders with disabilities from across Pennsylvania who work to encourage self-determination, empowerment, and leadership of high school students and other

youth with disabilities. Join the team each month for a lively phone chat for youth and young adults on topics that are important to

their future. These calls are led by PYLN member who are excited about sharing their experiences and insights with participants. Calls include time for sharing stories, asking questions, and introducing new resources in the PYLN Secondary Toolkit developed by youth for youth.Please visit the PYLN website at www.pyln.pbwiki.com for additional information and see the calendar section (next page) for topics/dates of upcoming calls.

To receive an electronic copy (PDF) of this newsletter, please send an email message to [email protected] with SYF News in the subject line.

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YAC-AZ members enjoying the holiday recruitment drive.

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community Compiled by Liliana Flores calendar

Through Mar 29 [10am – 6pm daily] Arizona Fine Art Expo (cost: $7-$8 season pass, under 12 free) 26540 N. Scottsdale Rd. – Scottsdale │480-837-7163 / www.arizonafineartexpo.com

Through Mar 29 [10am – 6pm] Arizona Renaissance Festival (cost: $8 - $18, under 5 free)12601 E. U.S. 60 – Apache Junction │520-463-2700 / www.renfestinfo.com

Through May 31[8am – 8pm] Chihuly: The Nature of Glass (cost: $5-$15, under 3 free) Desert Botanical Garden, 1201 N. Galvin Parkway – Phoenix │480- 481-8188 / www.dbg.org

Feb 19-24 [times vary] Mardi Gras Party Gras (cost: free)Westgate’s WaterDance Plaza, Loop 101 & Glendale Avenue – Glendale│www.westgateaz.com/mg.php

Mar 1 [5pm – 6pm] Declare Yourself: Taking Charge of your IEP (cost: free + toll charge) PYLN Conference Call │to connect, dial 1-309-946-5255, enter passcode 376191# [for information about PYLN, see page 7]

Mar 4 [9am – 4pm] 7th Annual Arizona Disabilities Expo (cost: free)Phoenix Convention Center, 33 South 3rd St. – Phoenix │602-470-1802, x114 / www.azdx.com

Mar 10 [8:30am – 2pm] 20th Annual Legislative Awareness Day (cost: free)AZ State Capitol Lawn, 1700 W. Washington St. – Phoenix │800-771-9378 / www.azgcdd.org/LegislativeDay2009.asp

Mar 13-15 21st Annual Ostrich Festival (cost: varies)Tumbleweed Park, 2250 S. McQueen Rd – Chandler │866-99-FAIRS (32477) / www.ostrichfestival.com

Mar 18 [9am – 4pm] 5th Annual American Indian Disability Summit (cost: free to consumers) Dodge Theatre, 400 W. Washington St – Phoenix │(602) 279-5262 / www.5aidissum.eventbrite.com

Mar 27-29 [10am – 6pm] 32nd Annual Spring Temple Festival of the Arts (cost: free)3rd Street & Mill – Tempe │480-355-6069 / www.tempefestivalofthearts.com/

Apr 3 [5pm – 12am] & Apr 4 [12pm – 12am] Tempe Music Festival (cost: $25-$45)Tempe Beach Park Amphitheater, 54 W Rio Salado Pkwy. – Tempe │480-970-FEST (3378) / www.tempemusicfestival.com

Apr 4 [8:40am – 4:15pm] Southern AZ Disability Rights & Resources Conference (cost: $10 - $30)Windemere Hotel & Conference Center, 2047 South Highway 92 – Sierra Vista │800-927-2260 / http://www.azdisabilitylaw.org

Apr 4 [8pm] Calexico with Sergio Mendoza y La Orkesta and Salvador Duran (cost: $20)Heritage Square,115 N. Sixth St. – Phoenix │866.468.7621 / http://www.ticketweb.com

Apr 5 [4 – 7pm] Declare Yourself: Steps to Plan for Your Future (cost: free + toll charge) PYLN Conference Call │to connect, dial 1-309-946-5255, enter passcode 376191# [for information about PYLN, see page 7]

Apr 24–26 Desert Challenge Regional Games Venue: TBD – Mesa │(480) 835-6273 / www.desertchallengegames.com

May 3 [4 – 7pm] Empower Yourself: What is It & Why is It Important? (cost: free + toll charge) PYLN Conference Call │to connect, dial 1-309-946-5255, enter passcode 376191# [for information about PYLN, see page 7]

longer relying on on Supplemental Security Income. If Freedom to Work were discontinued, many would be forced make a choice between their jobs or health insurance.

As of December 2008, a total of 1,049 participants in the program would be directly affected if discontinued according to David Carey, Arizona Bridge to Independent Living (A.B.I.L.) Advocacy Specialist, in an e-mail interview. However, indirectly, all Arizonans would be

affected due to the economic boost it provides to the state: if 1,000 people earning $20,000 per year are able to work as a result of the program, the combined total equals $20 million in wages spent in Arizona businesses, added Carey. Additionally, these wages generate approximately $400,000 as state income tax revenue.

So, my question is “Why are we even considering cutting a program that brings money into our state

if we are already facing a budget deficit?” One can hope the state will use some common sense and realize this program benefits everyone before deciding its fate.

Chris with his dog Damien.

(Keep the Freedom to Work? — continued from page 1)

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