Family
Support Network
of Illinois
Family
Support Network
of Illinois
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Bid Fond Farewell to Ed McManus Welcome Gloria Heggy as New Coordinator
Independent Computer Literacy Camps for Students with Disabilities
SSA Rules For Evaluating Individuals On SSI As They Reach Age 18
"FSN
Celebration and Press Conference" Announces $6.8 Million Budget Increase
and New Enrollment of 824!! Monday, Sept. 13, was a day of celebration for members of the Family Support Network. People with disabilities and their families gathered in the State Capitol Rotunda in Springfield to thank Governor Ryan and Secretary Howard Peters, III of the Illinois Department of Human Services for their efforts in increasing funding for the Family Assistance and Home-Based Support Services Programs. An unlikely press conference, cookies and punch were served and party hats and whistles were passed out. A huge "Thank You" banner with pictures of adults and children receiving services hung behind the podium.
The budget for the Family Assistance and Home-Based Support Services Programs increased from $11.6 million in Fiscal 1999 to $18.4 million in Fiscal 2000, a total increase of $6.8 million. By the time the enrollment process is completed, this new funding is expected to have allowed new enrollment of 824 adults and families who have children with disabilities! Enrollment in the two programs will have increased 72% in twelve months, from 1138 to 1962.
Charlotte Cronin, Daniel’s mom, and Executive Director of the Family Support Network welcomed the crowd and outlined the successes of the past twelve months. She spoke of the coalition of advocacy groups who came together to speak in a single voice for increased quantity and quality of services for people with disabilities. While the original objective of the coalition was $50 million dollars above and beyond the Governor’s proposed budget presented in February, the final increase was $29 million. While this did not meet our target, it was an historic expansion of funding, the first in many, many years and very exciting. Three million dollars of that $29 million contributed to the $6.8 million expansion of the Family Assistance and Home-Based Support Services Programs. Charlotte thanked Secretary Peters and Governor Ryan, who was unable to attend, saying, "We are here today to say thank you. Thank you for knowing we want our families whole and our children at home."
Secretary Peters, obviously touched by our appreciation, brought greetings from Governor Ryan and his "First Lady". He said that the $29 million increase represented "a major commitment" by the Ryan administration. He praised the work of the Family Support Network and the people at the rally for doing "champion work" supporting their family members with disabilities at home.
Other speakers included Carolyn Christiansen who is the sister of a man with severe disabilities and Chair of the DHS Consumer and Family Advisory Council. Terry Kunze and her daughter, Mandy, came from Joliet to speak of the importance of the programs in their lives. Jean Amico attended with her 16 year old son, Dominique, who has severe disabilities as a result of a brain tumor at age four. They had traveled from Woodstock, Illinois and shared how the Family Assistance Program has helped their family.
The "Family Support Network Celebration and Press Conference" was a huge success proving once again how powerful the voices of people with disabilities and their family members are. There is still much work to be done. While these increases are exciting and critical to those receiving them, the waiting lists are still at about 3500.
My daughter was kind enough to share with me last week how old I am. Let me summarize her, "Really old, Mom." She thought my age was impacting her clothing options. Well, I don’t know about that. I sure don’t feel old. But, I do know this. Life is spinning by too fast. And yet, it is revealing itself to be just plain amazing.
This year, in particular, has been full of surprises, wonderful surprises. And they all center around the Family Support Network. We have changed or "they" have changed. Or maybe it’s that the hard work we have been doing is finally bearing fruit. But, the Family Support Network seems to be "growing up."
The big successes are huge and obvious. The inclusion of the FSN in the "Do the Right Thing" Coalition". A 72% increase in enrollment in the Family Assistance and Home-Based Support Services Programs in 12 months. A visit with the Governor. A successful "Celebration and Press Conference" just two weeks ago.
Many are more subtle. We are being invited to "the table." More and more often, the small groups that meet to advise our DHS leadership include the Family Support Network.
We’re being quoted and even copied. Someone told me recently that our newsletter and e-mail techniques had been referred to as models to be imitated.
And, we received our first "Award." Thanks, Community Support Services!
Perhaps, most importantly, are the friends we have grown. I believe the concept of "Family Support" has moved from being a poor "stepchild" of the disability community to being accepted as one of many important supports that should be available to people with disabilities in Illinois. I am excited about the many traditional "service providers" and old guard "advocacy organizations" who call themselves our friends and have come through in so many meaningful ways for us.
This summer, we filed our incorporation papers and this November we will have our first "Board Retreat." Two weeks ago we found out that the Federal Administration on Developmental Disabilities has awarded a grant to the Office of Developmental Disabilities. This is a grant we helped co-write. It will focus on continuing systems change around Family Support. The grant is large and the FSN will be subcontracted a major portion of that.
I think we’ll have some growing pains. I know we’re in for more hard work. But, we will remain a grassroots advocacy organization made up of people with disabilities, their moms, their dads, their loved ones. That’s us! And that’s our strength.
We need you more now than ever. This is going to be a fun ride….. Come with us!
Family
Support Programs Bid Fond Farewell to Ed McManusThis spring saw an important transition for the Family Assistance and Home-Based Support Services Programs. Ed McManus, the father of Laura, a young woman with severe disabilities, had served as Coordinator of the programs for the Department of Human Services for six years. Ed had brought that incredible insight that only someone who has walked in our shoes can. The sad news for us is that Ed has left to be the Facilitator for North Suburban Network for the Department of Human Services. Ed is sad to leave us, but, excited about the new challenges his job will bring and the opportunities that he will have to support people with disabilities in a new setting.
The happy news is that Gloria Heggy has been chosen to replace Ed. Many of us feel we know Gloria well as she has worked as Ed’s assistant for years. She is a warm, compassionate person who really wants the programs to work for people with disabilities and their families.
When asked to make a comment for our newsletter, Gloria said, "One of the high points of my professional life is seeing the incredible growth in these programs after witnessing flat enrollment for several years and the disillusionment of people in the pool of applicants waiting to apply." And she added, "While I do not always have the privilege of approving every request that comes in, I always try to be supportive of new and creative ideas." She also said that she is always pleased to hear from people and they can call her at 1-800-843-6154 or 217-782-8834. Gloria’s e-mail address is gheggy@dhs.state.il.us. You can call Gloria to make sure you are on the waiting lists or "potential applicants lists" as DHS likes to call them. Gloria’s office can also provide you or your organization with registration forms, in English or Spanish.
The Family Support Network has been receiving phone calls and e-mails recently from new applicants to the Family Assistance (FSP) or Home-Based Support Services Programs (HBSSP) who have been told that they cannot receive services from the Home Services Programs run by the Office of Rehabilitation Services (ORS) at the same time they are receiving services from the Family Assistance or Home-Based Support Services Programs.
This is NOT TRUE!! The Office of Developmental Disabilities has a long standing agreement with the Office of Rehabilitation Services saying that the FAP and HBSSP will not supplant services from the ORS Home Services Program. If you are told by a ORS representative that you will lose services by enrolling in either the FAP or HBSSP, please call Gloria Heggy at 1-800-843-6154 or 217-782-8834. She will help you!
The University of Illinois Division of Rehabilitation-Education Services (DRES) is offering summer computer Independent Literacy Training camps for high school students with severe upper motor disabilities and visual impairments. The week long camps will be offered in June of 2000 to students (ages 14 to 19) who are academically in high school level courses. During the literacy camp, students will receive training in the use of a wide range of assistive technologies. Activities during the week center on a creating a WWW based diary and a water balloon catapult experiment with the results published on the WWW. The week will also include tours of research labs. The week is intended to help empower students through improved knowledge and understanding in the use of computer technologies for them to achieve their academic and career goals. The camp provides an opportunity for students to learn and discuss campus life issues with peers, university students, faculty and staff with similar disabilities. Financial support for tuition is available to qualified applicants. Please contact camp staff for details.
For an application or additional information contact: Khitam Alghazo, Associate Camp Director, Division of Rehabilitation - Education Services, University of Illinois at Urbana/Champaign, 1207 S. Oak St., Champaign, IL. 61820, Voice: (217) 244-6759, Fax: (217) 333-0248, TTY: (217) 333-4604, E-mail: kalghazo@uiuc.edu, WWW: http://www.rehab.uiuc.edu/camp.
The FSN office received a phone call from a parent in Peoria as we prepared for our press conference. She didn’t identify herself. But, stated that she felt the FSN Celebration and Press Conference was a "slap in the face." She has been waiting for services for her child for 6 years.
It was a heart breaking phone call. Our spirits were definitely dampened. So, "Mom from Peoria," we want you to know: We are doing this for you, for every child, every adult, every parent who needs support and is not getting it - we are doing this for them. If there were no waiting lists, we could go home.
Our Celebration had many goals. Of course, we wanted an opportunity to thank people who had helped us make progress this year. Of course, we need to educate the public about the importance of our families. But, most of all, we wanted a chance for the Governor and Secretary Peters to see our faces and know our children, so that we can continue to eliminate the waiting lists.
It is okay to be angry. It is okay to steamed. But, channel it. Help us. We need each other.
Charlotte
The Family Support Network receives any number of confusing phone calls from parents wanting more information about SSI and what they will need to go through to "qualify their child" as they turn 18. Social Security Administration offices seem to vary a great deal in how they difficult they make the process. One mom said she was made to feel like "a criminal", another talked of how each office seemed so different from another and how they felt like little "fiefdoms." We are dedicating a significant number of pages to an article that Julie Justice of the SSI Coalition for a Responsible Safety Net has written for us. The SSI Coalition is an important resource for people with disabilities and their families. If you feel like you are being "booted" around, please feel free to call them at 312/223-9600 or check out their website at www.ssic.org.
As most families of children with disabilities know, the Welfare Reform law passed in August 1996 made sweeping changes in the Children's Supplemental Security Income (SSI) Program. Many children (under age 18) went through a complicated and confusing "redetermination" process with the Social Security Administration (SSA) to see if they could still get SSI cash benefits. These children had to prove that they had impairments that met the new childhood disability standard that was included in the Welfare Law. More than 100,000 children nationwide lost their SSI benefits after these redeterminations.
Many families may be concerned about what will happen to their children with disabilities as they reach adulthood. Will they keep their SSI benefits automatically? Do they have to file a new application for adult disability benefits? What notices will they receive from SSA? The answer to these questions is somewhat complicated. This article explains some of the rules governing eighteen-year-olds with disabilities.
WHAT HAPPENS TO KIDS ON SSI WHEN THEY REACH 18?
The Welfare Reform law passed in 1996 included a provision that all eighteen-year-olds who had been receiving SSI benefits in the month before their eighteenth birthday had to have their eligibility redetermined using the adult disability standard.
These young adults face particular difficulties because their cases were initially decided using the children’s SSI disability standard. For "Age 18 Redeterminations," SSA uses the adult disability standard. Advocates and families members have expressed legitimate concerns that the adult standard does not take into account the nature of childhood impairments or the lack of vocational experience of most young adults.
DISTURBING STATISTICS
The statistics that the Social Security Administration keeps on Age 18 Redeterminations reveal that 56% of all eighteen-year-olds lose SSI. This number is extremely high, given that all these young adults were previously found to have had serious disabilities that entitled them to children’s SSI. SSA’s children’s and adult’s disability listings are supposed to reflect the same level of severity, so a child who met or equaled a childhood listing should not lose SSI after turning eighteen unless his or her condition improved significantly.
Another troubling trend is the huge variance in termination rates from state to state. Southern states such as Arkansas and Louisiana had termination rates of 76% and 77% respectively, in contrast to a national average of 56%. Such wide discrepancies indicate that some of the disability examiners in certain regions of the country have a bias against continuing SSI benefits for young adults.
WHEN DOES SSA REVIEW 18-YEAR-OLDS?
Anyone who was eligible for SSI during the month before their eighteenth birthday is required to have his or her case redetermined in the next year. SSA will conduct the redetermination during the one year period beginning on the individual’s eighteenth birthday. SSA must complete the redetermination before the child’s nineteenth birthday.
WHAT RULES DOES SSA APPLY TO AGE 18 REDETERMINATIONS?
The Social Security Administration evaluates all eighteen-year-old cases under the adult disability standard. This means that SSA uses the rules that would apply to an adult filing a new disability claim. The adult disability standard is outlined below.
If SSA does not complete the redetermination before the child turns nineteen, then a new standard, the medical improvement review standard (MIRS), is used to see if the young adult continues to be disabled. (The MIR standard is what SSA uses in its periodic Continuing Disability Reviews). SSA is under considerable pressure to complete Age Eighteen Redetermination before the deadline of the nineteenth birthday.
HOW DOES THE ADULT DISABILITY STANDARD WORK?
The adult disability standard is often broken down into a five step "Sequential Evaluation."
STEP ONE: Is the individual engaged in substantial gainful activity?
Because SSA defines disability in terms of a person’s inability to do work, the first question is whether an individual is working. If the individual is working and earning more than $700 per month, then SSA will find that he or she is engaged in substantial gainful activity. If the individual is engaged in SGA, he or she will not be found disabled. Note that SGA can include income from activities that are illegal, such as dealing drugs or prostitution. Thus, if a person sells $1,000 worth of drugs per month, SSA could find that he or she is engaging in SGA and is not disabled. If the individual is not engaged in SGA, go to Step Two.
STEP TWO: Does the individual have a "severe" impairment?
SSA does not really mean "severe" in the normal sense in this question. Rather, SSA is asking whether the individual’s impairment or combinations of impairments is more than minimal. The impairment must prevent or limit some basic work activities such as standing, walking sitting, pushing, seeing, hearing, speaking, understanding instructions, using judgment, responding to colleagues and supervisors. If the impairment does not limit any of these activities, then it is not considered "severe". If it is not severe, then the person is not disabled. If it is severe (i.e., more than minimal), then the analysis goes to step three.
STEP THREE: Does the individual have an impairment(s) that meets or equals Social Security’s Listings of Impairments?
Social Security has a list of physical and mental impairments, arranged by body system, which it treats as disabling. If an individual has one of the listed impairments with the detailed medical findings, he or she will be found disabled. If the individual does not have an impairment that meets or is medically equal to one of the listed impairments, then the analysis goes on to step four. The list of impairments for adults and children are different, although there is some cross-over.
STEP FOUR: Can the individual do his or her past relevant work?
At this point, SSA asks if an individual’s impairments prevent him or her from performing past work. For example, if the individual recently worked as a loader for a trucking company, SSA would ask whether the individual’s impairments prevent him from the doing the lifting, standing, throwing necessary to do that were required for this past job. SSA determines the individual’s residual functional capacity (RFC), which is a medical determination of how much work the individual can do, in spite of his impairments. Physical RFC is described in four levels: sedentary, light, medium and heavy. Non-exertional RFC factors are considered on a case-by-case basis.
To be considered relevant, work must have been performed in the last 15 years. If the individual’s current RFC would still enable him or her to perform past relevant work, he or she is not disabled. If RFC would prevent past relevant work activity, the evaluation proceeds to step five.
STEP FIVE: Do the individual’s medical impairments, age, education and work experience prevent him or her from engaging in other work?
At this step, SSA looks at an individual’s remaining ability to do any work that exists in the national economy. SSA weighs vocational factors, such as the individual’s age, education, and work experience, to see what jobs an individual could still perform. SSA plugs an individual’s RFC and vocational factors into a "grid." Based on the individual’s situation, the grid will dictate a finding of disabled or not disabled.
For individuals with significant non-exertional limitations, such as severe pain, or a profound inability to get along with co-workers, SSA must also evaluate these factors to determine if they further reduce the type of work he or she can do.
As a practical matter, very few people under age 50 can be found disabled using the grid. For these individuals, their best chance of getting a finding of disability is at step 3.
After step five, SSA issues a determination finding the person disabled or not disabled.
HOW DOES THE AGE 18 REDETERMINATION PROCESS BEGIN?
NOTICE: SSA is required to send a notice, the Age 18 Notice for Disability Redetermination, to individuals who were eligible for SSI in the month prior to their eighteenth birthday. SSA then has a year to complete the redetermination process.
The Notice tells families that they must call their local office or come in for an appointment, and bring the following information: Lists of medications the individual uses and information about their condition, such as hospital stays/visits, doctor visits, work activity, counseling and/or therapy, schools and/or special classes or tutoring, teachers and/or counselors who have knowledge of the individuals conditions.
If the individual does not respond to this notice by a certain date listed in the notice, SSA will send another letter stating that the individual’s benefits will stop.
CASE EVALUATION
Assuming the individual responds to the first notice and brings his/her medical records and other evidence to SSA, the individual’s case will then be evaluated. SSA will send all the information to the Bureau of Disability Determination Services (DDS) in Springfield, Illinois. This is the agency charged with making disability determinations in SSI cases. DDS will evaluate the case using the adult disability standard.
If the individual is determined to meet the SSI Adult Disability Standard, SSA will send out a notice stating that benefits will continue.
If DDS finds that the individual is not disabled under the adult disability standard, they will send the individual and his or her representative payee a notice of the time and place for a DISABILITY HEARING.
DISABILITY HEARING
At the Disability Hearing, the individual and his or her representative payee, and legal representative (if he or she has one) appear before a hearing officer to present evidence and testimony about the individual’s case. It is very important to attend these hearings, as they often serve to convince a hearing officer that the individual meets the disability standard.
A few weeks after the hearing, SSA will send out another notice stating the benefits will continue or benefits will stop.
WHAT APPEAL RIGHTS ARE AVAILABLE?
If the individual receives any notice from SSA stating that his or her benefits will stop because he or she was found not disabled under the adult disability standard, he or she can appeal the decision. The individual has sixty days to file the appeal from the time he or she receives a notice stating that benefits will stop .
ARE BENEFITS PAID DURING THE APPEAL?
They can be. Individuals have a right to keep getting their SSI benefits while they appeal SSA’s decision. To get these benefits during appeal, the individual must appeal within 10 days after receiving the notice stating that the SSI benefits will stop.
If the individual later loses the appeal, SSA may ask that the individual pay back any benefits he received during the appeal. However, the individual can seek a waiver, so he or she does not have to repay this money paid during appeal.
ANY TIPS FOR HELPING 18-YEAR-OLDS KEEP BENEFITS?
The key to success in Age 18 Redeterminations is RECORDS, RECORDS, RECORDS. Getting medical records, school records, psychiatric/counseling records, physical or occupational therapy records, etc, to SSA is essential. It is extremely important that young adults continue to see their medical and social service providers on a regular basis. Consistent documentation of the individual’s impairment and the impact of the impairment on his or her functioning are critical to a finding of disability.
Teenagers and young adults who drop out of school and are not in any kind of structured day program may have difficulties proving that they continue to be disabled. On the other hand, those who remain in school special education programs, or continue in supportive environments such as workshops or job training programs, are going to have more information about their condition and their daily activities. This evidence will prove helpful when SSA reviews their eligibility.
Children who did not meet one of SSA’s listed impairments, but were found disabled under the "functional equivalence" standard, may have an especially hard time proving that they continue to be disabled when they turn eighteen. For instance, children with learning disabilities may have difficulty meeting an adult listing. It will be especially important for young adults to document the impact of their impairments on activities of daily living, social functioning, concentration, persistence or pace, and functioning in the work setting. Keep diaries, summaries of work activities, and notes from family and friends who interact with the young adult.
LEGAL HELP IS AVAILABLE
The SSI Coalition for a Responsible Safety Net helps children and adults with disabilities get and keep SSI benefits. Feel free to call and speak to one of the several attorneys on staff for help with your case. The phone number is 312/223-9600.
