fsn@familysupportnetwork.org

October 2006 Newsletter

For a complete PDF version click Here

• Fall Letter Writing Campaign - Funding for Those Who Have None

• What One Mom Can Tell Us - The Importance of New Funding

• Key Communicator - A Critical Link to Success

• Lake Park School Sock Hop Benefits FSN

• Illinois Direct Support Professional Workforce Initiative

Fall Letter Writing Campaign - Funding For Those Who Have None

$26,000,000 for New Services . . . Help Us Help You!

Write The Governor Now!

In Chicago, Julia lives with her her 82 year old mother and her father who is losing his vision. They worry - what will become of Julia as they continue to age?

In Peoria, Chris Ferron points to the picture of a school bus telling his mom that he wants to go to school. Chris graduated from high school in May. Now, five months later, he wonders when he can start going, doing, and learning again. His mom and dad are running out of vacation days supporting him at home.

In Naperville, Anna-Marie Kissel is experiencing major health and life changing issues. Her twenty-five year old daughter with disabilities depends on her. Anna Marie is Erika's primary caregiver, case-manager and the coordinator of her life, as well as the advocate for all of Erika's extensive health care needs. Her husband must work. What will happen as Anna-Marie struggles with her own health needs?

In Effingham, Deb LeCrone has been waiting for services for her daughter, Dana, for 13 years. Dana is now 16 years old and needs support with every aspect of her life. Though she receives some supports from DORS, it is not enough to piece together a continuum of supports that will allow Dana to continue to live at home. How long must they wait?

In East Moline, Shonda Rummel’s 13-year-old son is abusive to others and himself.  Shonda has had to cut her work hours in half because of child care issues.  She can’t find a respite worker for home, the respite program is full, and there is no one to help on the days she needs extra support for him.  Her two teenage daughters are graduating soon so she will lose even their support. Where can she turn?

In Harrisburg, 7-year-old Dusty Owen's life evolves around video games and DVDs. Dusty has Autism. Dusty has come a long way, from being totally nonverbal a few years ago to quite verbal and functioning now. His parents believe that as an adult, he will be able to function in the outside world and hopefully even have a job, but, only with appropriate supports. Without those, his potential will be lost. What will become of Dusty?

All over the state, children with Autism are wasting valuable years waiting for services that could minimize or eliminate their disabilities. What is the cost to their families? What is the cost to the state?

Governor Blagojevich must hear OUR STORIES NOW…as he is forming his budget NOW for next year. YOUR STORY is important! Please write the Governor and your State Legislators TODAY!

Together we can make a difference!

Let’s Be Clear… If you don’t advocate for adult services when your child is a minor – you’ll have no right to complain when he is an adult.

What Is Your Nightmare?

·         My family fails

·         We (my child and/or I) can’t work

·         My adult son or daughter sits at home with nothing to do

·         My child is forced to live far from me to receive services

·         Our family lives in isolation and exhaustion

·         Abilities disappear

What You Can Do!

·         Join the Family Support Network

·         Become a FSN Key Communicator

·         Attend a FSN One-Day Conference

·         Invite the FSN to speak at your function, meeting, or conference

·         Write a Letter

·         Make a Phone Call

·         Attend a Meeting

·         Empower a Self-Advocate

Our Toolbox for Change!

·         Each Other

·         Information

·         Communication

·         Our Stories

·         Our Passion

·         Action

What PUNS* Tells Us So Far!

The Waiting List

·         263 adults with developmental disabilities are living with caregivers over the age of 80.

·         908 adults are in EMERGENCY need of 24-hour residential services.

·         1,846 adults are in CRITICAL need of 24-hour residential services.

·         350 families are in EMERGENCY need of respite supports.

·         881 families are in CRITICAL need of respite supports.

·         2,219 adults or children are in EMERGENCY OR CRITICAL need of behavioral supports.

·         12,000 surveyed and growing!

*You can read more about PUNS (The Prioritization of Urgency of Needs For Services Survey) in the September FSN newsletter at http://www.familysupportnetwork.org/Newsletter2005September.pdf

Our Goal - $26,000,000 in New Services!!

Our Letter Writing Campaign is Right Now!! October and November 2006

This fall, the Family Support Network is launching an intensive letter writing campaign. Our goal is to get $26,000,000 in the Governor’s Proposed Budget which he will present to the Illinois General Assembly in February of 2007. The Illinois General Assembly will debate and vote on this budget by the end of session (usually the end of May). Once a budget item is included in the Governor’s Proposed Budget it is unlikely to be removed. If it is not included, it is very difficult to get it added later. Too often in the past, we have gotten into the process too late. NOW IS THE TIME!!  We are coordinating a huge letter writing campaign for this October. We are building an infrastructure of Key Communicators, which is really a system of phone tree captains. Our goal is to have a “Key Communicator” in every State Representative’s district. If each Key Communicator can inspire 10 people to write letters to his legislators and the Governor, imagine the impact we will have.  Every Illinois State Representative will receive 10 letters. Every Illinois State Senator will receive 20 letters. Imagine the momentum we will be able to build. Imagine Governor Blagojevich getting almost 2000 personal letters.

Web Links for Help

Family Support Network: http://www.familysupportnetwork.org

Arc Action Center : http://congress.nw.dc.us/thearc/home/

Illinois Life Span:  http://www.illinoislifespan.org/

Illinois General Assembly: http://www.ilga.gov/

Illinois Board of Elections: http://www.elections.il.gov/DistrictLocator/AddressSearch.aspx

To review the PUNS form in preparation for a meeting with your Independent Service Coordination (also known as Pre-admission Screening) Agency in your area: http://www.dhs.state.il.us/mhdd/dd/pdf/forms/PUNS%20Form%20English.pdf

Partners in Policymaking “Making Your Case” free on-line training: http://www.partnersinpolicymaking.com/makingyourcase/:

Sample Letter

The Honorable Rod Blagojevich  

207 State House

Springfield , Illinois   62706                                               

Date

Dear Governor Blagojevich,

State what action you would like the legislator to take.

As you consider your budget for Fiscal Year 2008, please remember the thousands of people with developmental disabilities that are struggling to survive without desperately needed supports and services. I am writing today to ask you to include $26,000,000 dollars in next year’s budget. This new funding would allow approximately 1,400 people who are not currently receiving services to begin to receiving them. (Feel free to rewrite this in your own words so that each letter has a power of its own.)

Tell your personal story.

Paint a word picture of your family.  How does the above situation affect your family or people you know and love?  Give specifics of what is happening in your family.  Be specific and stick to only those things that apply directly to the issue at hand.  Don't make stuff up. 

Share your nightmare.  Share your dream. 

If the legislator does what you are asking, how will that affect your family?  If not, how will that affect your family?

Sum up what you are asking for.

In 2 or 3 sentences, clearly, concisely, and passionately restate the issue, the action you are requesting, and why. 

Conclusion. Offer to provide more information if needed.  And thank the legislator for their attention and support.

Sincerely,

Your signature

Patty Parent

Home Address

Hometown, IL  Zip Code

Home phone number

Email address

If you can, include a

picture of your child!!!

This is very powerful!

Mail Your Letters To:  

*The Honorable Rod Blagojevich

207 State House

Springfield , IL   62706

(Dear Governor Blagojevich,)

*John Filan, Director

Governor’s Office of Management and Budget

108 State House

Springfield , IL   62706

(Dear Director Filan,)

*Carol L. Adams, Ph.D., Secretary

Department of Human Services

100 S. Grand Ave. East

Springfield , IL   62762

(Dear Secretary Adams,)

And Your State Legislators

****************************************************************************

Dot Points For Your Letters

·     No one knows the challenges of caring for children or adults with disabilities better than their families.  The cost of special care and equipment can be so great it is impossible to make ends meet.  It is often difficult to take a loved one out in the community, isolating the individual and the family. 

·     Many people with disabilities need constant care and supervision, placing caregivers under great stress.  Caregivers must often give up jobs and careers, placing their families under further stress.  Issues that confront families include financial problems, marital stress, missed opportunities, fragmented services, confusing and contradictory information, stigma, isolation, uncertainty, and exclusion from decision-making.

·     The $26 million will provide NEW enrollment in programs for individuals (adults and children) who do not currently receive services.  They include a variety of choices such as CILA, Intermittent CILA, the Home-Based Support Services Program, and the Family Assistance Program.

·     New residential placement in Illinois is currently only available to individuals with disabilities who are in desperate crisis -- and even then it’s not guaranteed.

·     The Family Assistance and Home-Based Support Services Programs are part of a growing national movement to offer supports and services to individuals with disabilities and their families at home.  These programs allow individuals and families to design services and programs that are flexible and fit their own unique needs. 

·     The Home-Based Support Services Program allows adults who have severe developmental disabilities or severe chronic mental illness to access supports and services with a value up to $1,809 (three times SSI) per month. Currently over 1,600 adults with either developmental or mental health disabilities are enrolled in the program. 

·     The Family Assistance Program currently provides a monthly stipend of $603 (one times SSI) a month to families that include minor children with developmental disabilities or children with severe emotional distress. Taxable family income cannot exceed $50,000. There has been NO NEW enrollment for this program in FIVE YEARS!

·     A Children’s Waiver will allow families that include children with disabilities to access the important supports and services they need to be strong and healthy and to raise their children to be the best that they can be IN THEIR OWN HOMES.

·     For all who will write letters to the Governor, there are thousands who can’t.  Thousands of people are in severe need.  So severe that they can’t speak out for themselves to ask for or demand what they need.  

What One Mom Can Tell Us . . . The Importance of New Funding

                                                                                                                                                 Mary Camp will never forget the day she opened the envelope telling her that Tricia had been selected for the Family Assistance Program. She cried. Her nightmare was over.

Her daughter, Tricia, would be able to continue to live at home. Mary, a single mom, would be able to keep her job as a middle school special education administrator. She would be able to meet Tricia’s needs in her home. Tricia would have the supports and services she needed to live a safe, full, and satisfying life in the home and community in which she had grown up.

Now, seven years later, Mary has a new nightmare. As a special education administrator she is watching young people with developmental disabilities just as challenging as Tricia’s “transition” from high school to nothing, no services.  For those young people, envelopes have not been arriving. Services are not available. New families are not being chosen. For five years, there has been no new enrollment in the Family Assistance Program (FAP). There has been only minimal new enrollment in the Home-Based Support Services Program (HBSSP).

This year there is no new funding for Community Integrated Living Arrangements (CILA) which provides services to people living in group homes, not even the traditional 100 new openings the legislature has provided most years.

When Tricia was a little girl, Mary worried about making ends meet, bare necessities -- medication, diapers, support shoes.  With the Family Assistance Program, Mary was able to also afford an accessible van, a ramp, and respite services.

But, just as important, was knowing that enrollment in the FAP ensured Tricia’s transition into the HBSSP as an adult. Mary knew that Tricia would have the supports needed to stay at home for the long-term.

“Now that she’s 25, the most important thing to her is access to the community.” 

The Home-Based Support Services Program funds her day program. The Home-Based Program funds personal supports allowing her to go shopping, bowling, and to McDonald’s with friends. 

Without the HBSSP, Tricia would not be able to live at home while her mother works. Chances are strong that she would have to live far from home.  Mary asks, “How many kisses would she get in the morning?  How many people would say how beautiful her blue eyes are?  Only I can do that.  When her name came up for residential services, I was able to say, ‘We’re fine.’ 

"Parents are the advocates for their child.  It is their responsibility to be sure that their needs are met.  You have to open your eyes and ask questions as a parent. You have to think about what you hope will never happen."  What will happen to your child when they graduate if they have no services? What will happen when you die?

In Peoria ’s District 150, there have been 10 graduates with significant disabilities since 2003. So far only ONE of those wonderful young people is receiving services. That means their skills are regressing. That means their parents are struggling to hold on to their jobs and provide the supports they need.  Looking ahead, that number is only going to multiply.  In the next three years, District 150 anticipates 17 new graduates. Will there be services available for them?

If we don't pressure the Governor to add funding in this years' budget, families will continue to struggle and adults will continue to sit at home. No increased funding means nothing - nothing for families, nothing for those adults.  How long can our families survive with nothing?  How long can adults with disabilities do nothing?  How long will you do nothing?

Key Communicator - A Critical Link to Success

Key Communicator… sounds difficult, but it’s NOT. Really, it’s just a too big phrase for “Phone Tree Captain”.

Everyone knows that a personal contact often makes all the difference when it comes to taking that “next step” in our advocacy efforts. The Family Support Network is challenging itself to new levels of excellence by making sure that every FSN member has that special someone who can nudge them to that next step, a personal contact.

We would like to challenge you to become a “Key Communicator.”

·     You will be provided with a list of approximately a dozen Family Support Network members in your area.  You can even select people you already know! 

·     As needs arise, we will ask you to make phone calls to Family Support Network members on your list to inform them of key issues and ask them to take action.  You don’t even have to leave your home!

·     We will give you all the information you need to inform your list and encourage their action.  As you and other Key Communicators spark your groups to action, imagine the impact we can have across the state!  Talk about making a difference and having a voice!

·     We will also ask you to help us keep your list’s contact information current by notifying us when there are changes in phone numbers, addresses, and e-mail information.

·     When you hear of new people interested in supporting the Family Support Network, sign them up so we can add them to our database.

To sign up, please e-mail your name, address and phone number to InTheKnow@familysupportnetwork.org.

For more information contact:  Michele Westmaas at Michele@familysupportnetwork.org or 217-285-2301 or Dorelia Rivera-Martinez at Dorelia@familysupportnetwork.org or 847-791-2432

Lake Park School Sock Hop Benefits FSN

What can you do to support the Family Support Network’s mission of advocating for people with disabilities?!  Well, you can do what Gloria Zurita and Kellie Wheeler did and hold a SOCK HOP at the local school!  Lake Park School was happy to be able to help the Family Support Network and, at the same time, teach kids how important it is commit themselves to worthy causes. 

Gloria is a mom of four children including Sabrina, her youngest daughter, who has Down syndrome.  Gloria is also one of the Vice Presidents of the Lake Park School PTA. When asked why she thought it was important to support organizations like the FSN, Gloria said, “They (our children with disabilities) are special people with the same dreams and needs as the rest of us.  They have incredible potential and teach us more than we will ever teach them.” 

Gloria’s biggest fear for her “active, fun, loving child” is that she may not receive the proper assistance in the future.  In our interview, she asked “Why is it that we ( USA ) can provide funds for other countries needs without hesitating, and yet when it comes to our own peoples’ needs there is so much red tape? We need supports that will aide our loved ones with their special needs.”  (We couldn’t agree more!)

When the Family Support Network heard these kids held a SOCK HOP for us, we were ecstatic!  In the past, the school has held fundraisers for other organizations, and we are humbled and grateful that this time they chose the Family Support Network and our mission. 

A VERY special thanks to Gloria, Kellie Wheeler (the former PTA president and organizer of the sock hop), and everyone else, especially the kids, who supported the Family Support Network on that very fun day!

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Direct Support Professionals (DSPs) play a critical role in the lives of people with developmental disabilities and their families. DSPs[1] support people with disabilities in activities of daily living, social activities, personal contacts, coordination of health care, community interactions, and more. The quality of support people with disabilities receive from DSPs has a profound influence on their daily lives. In Illinois , as in the rest of the nation, our community support system faces high direct support turnover and vacancy rates. Inadequate wages and benefits, lack of career and educational ladders, and societal devaluation of helping professions take their toll on this vital workforce endangering those who rely on this support.

The DSP Workforce Initiative, a project supported by the Illinois Council on Developmental Disabilities, brings together stakeholders to address the scarcity of qualified people available to provide direct support for people with developmental disabilities living in communities throughout Illinois .  This group has developed a plan to make significant changes in Illinois to improve the recruitment and retention of DSPs.  The goals of this plan focus on the following:

·         Improve recruitment and retention strategies in Illinois

o        Increase the wages and benefits of  DSPs and supervisors by $3/hour

o        Create tools that employers can use to recruit and retain quality DSPs

o        Improve educational opportunities for DSPs and supervisors

·         Create career ladders for DSPs to advance professionally

·         Improve the public image of DSPs and the value of their work

·         Develop a professional association for DSPs in Illinois with national affiliations

·         Improve mentoring and supervision practices in Illinois

·         Identify methods for tracking workforce data and using this data to evaluate and report on workforce conditions 

Through this initiative, an exciting resource has been developed for individuals with disabilities and their families to assist in finding, choosing, and keeping great DSPs.  This Toolkit was created by the project partners: the Institute on Disability and Human Development at the University of Illinois at Chicago as well as the Institute on Community Integration at the University of Minnesota .  For more information about this Toolkit or the DSP Initiative, contact Katie Keiling at kkeiling@uic.edu or (312) 996-1002 or visit http://www.rtc.umn.edu/ildspworkforce/