Family
Support Network
of Illinois
Family
Support Network
of Illinois
For a PDF version click HERE
Yes, it’s true! The Governor’s proposed budget increase of $4 million was still in the budget when it passed in mid-April. Governor Ryan had proposed an increase of $1,698,000 for the Home-Based Support Services Programs to enroll an additional 143 adults and $2,400,000 for the Family Assistance Program to enroll an additional 370 families with minor children with disabilities. New enrollment will start sometime soon after July 1st when the new fiscal year starts. It is hard to estimate exactly how many names will be pulled or how large the applicants pool will be after the drawings are over. But, remember this, with this new enrollment, participation in the two programs is expected to have increased from about 1200 participants at the beginning of Fiscal 1999 to over 3100 at the end of Fiscal 2001!
We have enjoyed tremendous success these past few years in increasing services to adults and children with disabilities who live at home. It is important to remember to say "Thank You" to the people who made it happen. Please take time to drop a "Thank You" card to Governor Ryan and your legislators. Especially, if your name is drawn in July. Especially if your name is not…. You need to let them know you are still waiting.
The new Supported Living Services Program (SLS) still has openings in most areas! The Supported Living Services Programs were described in detail in our last newsletter. The SLS program was recently introduced by the Illinois Department of Human Services and was designed to provide funding and support for individuals currently living at home who meet established criteria. Priority applicants are eligible adults who are not currently receiving any support services from the Office of Developmental Disabilities or Office of Rehabilitation Services (except Respite or Federally funded vocational rehab services).
If you think you may qualify or have further questions, contact your local Pre-Admission Screening (PAS) Agency or the Department of Human Services at 217-785-7160. You will find a list of PAS Agencies and their phone numbers under State of Illinois Services (Button directly to that info??). If you need additional information to find the right person to contact, please feel free to call Charlotte Cronin at 309-693-8981 or CharlotteCronin@home.com.
Two Bills would Provide Major Relief for Families in Congress Now!!
We Need Your Help Now!!
Are You Afraid of Losing Your Health Insurance?
Are You Underinsured? Have You Had This Experience?
Your family is described as "middle income" but, you can’t afford his hearing aides?
Or you can’t afford the new wheelchair your child needs?
Or you can’t afford the physical therapy she needs?
8% of children in this country have significant disabilities. Many do not have access to critical health care services they need.
Many families are forced to stay impoverished, put their children in out of home placements, or simply give up custody of their children --- so that their children can maintain eligibility for health coverage and needed services through Medicaid.
Under the Family Opportunity Act of 2000, Medicaid would provide comprehensive maintenance and preventative health care services that other employer health plans and CHIP/SCHIP programs do not. (In Illinois, our CHIP program is known as "KidCare".) Medicaid is the federal health care program available to individuals who meet qualifying income guidelines.
Families with special needs children are forced to turn down jobs, raises, overtime and other opportunities to maintain income eligibility for SSI or Medicaid.
The Family Opportunity Act of 2000 is intended to address the two greatest barriers preventing families from staying together and staying employed. The first is lack of access to appropriate health care services, and second is lack of access to the advocacy and assistance services they need to help cut the "red tape" to meeting their children’s health care needs.
The bill would allow states to offer middle-income families of children with disabilities the option of buying into Medicaid. Currently, these children are ineligible because their families make too much money. Because of this restriction, they are often uninsured or underinsured because insurance is not available through an employer, is too expensive, or has a very limited benefit package.
Here are a few details:
The program would be available to families with incomes up to 600% of poverty! For instance, that would mean a family income of up to $102,300 for a family of four!
Families would use their private insurance first and Medicaid would cover the rest within their guidelines.
States could charge premiums. But, the total of private insurance premiums and Medicaid premiums could not exceed 5% of family income at or below 300% of poverty. For families with income above 300% of poverty, the premiums could not exceed 7.5% of family income!
The Act provides for inpatient psychiatric hospital services for individuals under age 21 in home or community-based services waivers.
The Act gives states the option of creating "demonstration" projects that would include individuals with "potentially" severe disabilities.
The third part of the bill would fund Family-to-Family Health Information Centers run by people with disabilities, parents and professionals!
At this point in time, there is no real opposition to this bill, just Congressional apathy. There are currently 23 co-sponsors in the Senate (see list) but only 3 are Republicans. If this bill is going to be successful, it needs strong bipartisan support and a hearing.
This is historic legislation. We need to get to our legislators and ask them to sign on as co-sponsors of this bill. Please write a letter or call your legislator today! Please let me know if you have. If you would like to read more about the bill, check it out at http://thomas.loc.gov. The bill is S. 2274.
Remember what we’ve said before, "We can grumble and groan, we can shake our fists at the sky, but if we don't tell our stories.... we have no one to blame but ourselves!" I am looking for people willing to visit their Congressman on this issue. If you are, I can put you in contact with other FSN members in your Congressional District.
Let me know! E-mail me or call me (309-693-8981) with questions!!
THE LONG TERM CARE AND RETIREMENT SECURITY ACT OF 2000
United States Senator Charles Grassley has introduced Senate Bill 2225, the Long Term Care and Retirement Security Act of 2000. This bill would allow individuals a deduction for qualified long-term care insurance premiums, use of such insurance under cafeteria plans and flexible spending arrangements, and provide an income tax CREDIT to long-term caregivers. That’s us!!!
This bill was designed to provide assistance to long-term care-givers, including those caring for the elderly and individuals with severe disabilities. The deductions relating to insurance premiums and cafeteria and flexible spending programs would provide significant relief to families that participate in these programs and/or services. The amount of the tax CREDIT rises in increments of $500, beginning with $1000 in the year 2000. By the year 2004 and thereafter, the tax CREDIT will reach $3000. Remember, a tax CREDIT is money subtracted from the total taxes that you owe. This is substantial! For further clarification, you can find the text of the bill on the THOMAS Legislative Information website: http://thomas.loc.gov. Look under the Legislation heading at S. 2225.
Please contact your United States Senators and Representatives and let them know that this is important to your family! If you pay for long term care insurance or have cafeteria or flexible spending programs available to you, you already know that this could translate into huge savings for your family. Keep in mind that if this bill passes, by the year 2004, your tax credit will be equal to about half of what the Family Support program would provide. Let’s let them know, loudly and clearly, that we want this!
Visit! Write! Call! E-mail!
The Honorable Richard Durbin
364 Russell Building B-40-5
Washington, DC 20510
312-353-4952
dick@durbin.senate.govThe Honorable Peter Fitzgerald
Dirksen Building
Washington, DC 20510312-886-3506 senator_fitzgerald@
fitzgerald.senate.govAnd YOUR Congressman,
Call us if you need help identifying who that is or check out:
(*All Illinois state citizens are represented by Senators Durbin and Fitzgerald. However, we each have only one Congressional Representative. There are 19 in Illinois)
Here is a sample letter for your convenience. Please rewrite to reflect your concerns, your requests, and your personal family story!
The Honorable Richard Durbin
364 Russell Building
Washington, DC 20510
May 30, 2000
Dear Senator Durbin,
State what action you would like the legislator to take. Example: I am writing to ask you to co-sponsor S. 2274, The Family Opportunity Act. This bill would help middle income families, like ours, caring for a child with disabilities and special health care needs to access needed Medicaid services.
Tell your personal story. Example: Our youngest child, Bobby, is eight and has Down syndrome. Bobby has global delays developmentally. His cognitive abilities, fine and gross motor skills, as well as speech are affected and he has had therapy in these areas since infancy. Some of this therapy has been provided through Early Intervention and our school system. We have also sought private services as well. Bobby has also had numerous health related problems. He had a heart defect at birth that was successfully repaired. Bobby has a weak immune system and seems to catch every virus that comes around, many of which turn into respiratory illnesses or pneumonia before they’re through with him. Bobby has had numerous sets of ear tubes and has recently been diagnosed as having a hearing loss that will require hearing aides.
And how the program does or could assist you, your child, and your family. Our family has health insurance through my husband’s employer. Our health insurance, however, does not cover many of the expenses that we’ve incurred, including hearing aides. These expenses have been an extreme financial hardship for my family. My husband and I have worked hard to pursue the American dream and be responsible parents. Yet we are penalized by not being able to access the services our son needs. We need improved access to special health care services for our child and this bill would allow us to pay a premium for necessary Medicaid services for Bobby.
Sum up what you are asking for. Example:. As the parent of child with disabilities and special health care needs, I again urge you to support S. 2274, the Family Opportunity Act.
Conclusion. Offer to provide more information if needed. Example: Please consider me a resource. I will be happy to help in any way I can. If you would like additional information, please feel free to call. Thank you for your attention and your support.
Sincerely,
Your Name
Your Address
Your Phone
Holly Riordan, Joanell Voigt, Alan Goldberg, Jean Amico and Cindi Swanson meet as part of the Task Force Team from the North Suburban Network to discuss their dreams for their area.
March 13!! What an exciting day! The opening day of our first "Family Leadership and Systems Change Project Retreat!" Sixty-one family members, people with disabilities, Illinois Department of Human Services staff, and other special guests gathered at Starved Rock for the first of three task-force retreats to take place over the next year.
This task force is the result of a grant developed collaboratively between the Family Support Network (FSN), the Illinois Department of Human Services (DHS), and the Illinois Affiliated Program in Developmental Disabilities (IDHD) at the University of Illinois in Chicago and funded by the Federal Administration on Developmental Disabilities.
The goal of the task force? Learn what good family support should look like, understand what it looks like in Illinois, dream our best dreams for what we would like it to look like in Illinois. Then, come up with an action plan for making those dreams come true.
John Agosta of the Human Services Research Institute in Salem, Oregon, spoke about the issues that confront families, the values and principles of family support, and the history of the Family Support Movement. He shared the successes and failures in other states. The good news: Illinois has GREAT Family Support Programs in the Family Assistance and Home-Based Support Services Programs.
Melissa Wright, Associate Director of the Office of Developmental Disabilities, Joanell Voigt of Community Alternatives Unlimited in Chicago, and Elizabeth Lacey of Community Support Services in Brookfield shared their perspectives on family support in Illinois. Gloria Heggy, Coordinator of the Family Assistance and Home-Based Support Services Program, gave an update on those programs. We learned that, besides the Family Assistance and Home-Based Support Services Programs, there are many individual programs out there that support families, but, not in any cohesive state-wide system.
Cathy Ficker Terrill, then led the group in dreaming their best dreams for family support in Illinois. Together we shared great ideas and between us, the ability to make them happen! These dreams were put into the form of goals and the task force participants came to consensus regarding their choices for action in the next year. Task force participants divided into teams according to what network they are in. Each team worked to develop an action plan to further these goals.
The retreat was a powerful and a great beginning! We know we can make a difference by working together. Network teams will be starting that process prior to our next retreat in August by addressing the action items they developed. We have lots of work to do but we know that together we can make our dreams come true!
Look for our Task Force Goal and Objectives on the next page. If you would like to connect with your network team, please contact the FSN office at 309-693-8981!
Big thanks to Melissa Wright and all her staff. It is wonderful to be really listened to!!
TASK FORCE GOAL: OUR FAMILIES ARE SUPPORTED AND INCLUDED IN OUR COMMUNITIES
Objective 1: All families have equal access to information and receive
coordinated family support services tailored to their own needs.
Action Step: There will be a central site for distribution of information
about services and supports for families who have members with disabilities.
Objective 2: Collaboration between schools and communities to allow family
support and continuity of services.
Action Step: School personnel are trained on family supports available in
Illinois.
Objective 3: Families have access to respite when, where, and how they need
it.
Action Step: Funding for respite is expanded to increase services and
increase salaries for respite staff.
Objective 4: Funding is attached to individuals and families instead of
providers.
Action Step: The Family Assistance and Home-Based Support Services Program
has increased funding to meet the needs of people on the "potential
applicants" list.
Pre-Admission Screening (PAS) Agencies are funded by the state of Illinois to determine eligibility for services and to provide independent case coordination in the State of Illinois. PAS Agencies are located throughout the state for convenient access and can help to connect individuals with disabilities to services for which they are determined eligible.
