 |
|
|
|
| About FSN Advocacy Family Stories Family Support Best Practices FSN Information Available Fundraising Links Newsletters Upcoming Events What are Home-Based Support Services & Family Assistance & How Can I Apply? |
February
2003 Newsletter
Home-Based Support Services - The Move to Waiver Funding What Has Happened? What Are We Doing About It? The
past year has brought incredible budget challenges to the State of Illinois. The
Illinois State General Assembly has become dedicated to “capturing” all the
federal dollars that it can. This spring, the Home-Based Support Services
Program was “waiverized” to do just that. The Supported Living Services
program and the “new” Home-Based Support Services program were consolidated
and new rules written. Our
options were limited. If we simply opposed the change, the Home-Based Program
would have disappeared completely in the merger with other Medicaid funded
programs. We would have been voiceless in shaping it. Although the new program
is not as flexible as we know it needs to be, we continue to work very hard to
modify and improve it. We are grateful that we have been able to offer the input
of FSN members throughout the state who are struggling with these changes. Thank
you for your ongoing help! We
are not finished. Please stay with us! One
of the agreements reached last spring was that a committee would be formed to
meet monthly and continue the process of refining the rules and improving the
program. That process is on-going and will continue for a long time. The
committee has been named the In-Home Supports Standing Committee. Following is a
summary of the issues being addressed. We also send updates to
the FSN e-mail distribution list whenever we have information that we believe
you will want. Please make sure we have your e-mail address if you are
interested. Thanks! Following
are summaries of the status of key issues of importance to participants in the
programs. Exceptional
Level of Care Funding Criteria A
key agreement reached by the Waiver Workgroup was that no one would lose
services. The Office of DD offered to create an “exceptional level of care”.
Office
of DD staff understood that to mean just people who, because of these changes,
would be receiving services funded by more than one waiver. This included
individuals receiving services from the ORS Home Services Program. But there
were others as well. Advocates understood the agreement to also include other
services funded by the Office of DD. The most outstanding examples are
developmental training and
respite. In
the past, participants in the Home-Based Support Services program used only $300
of their monthly allotment for developmental training. The Office of DD absorbed
the other $567 (for a total of $867) per month. This was referred to as an
“offset” and the difference was made up through grant funding to local
agencies for developmental training. In addition, many families were dependent on Office of DD grant funded respite to knit together enough services so that care taking family members could work, do things like grocery shop, and have a little time for themselves. Those families are now being allowed to use only their HBSSP funding. This is, far too often, not enough. Some of the stories we are hearing from families are heartbreaking. To satisfy our concerns, the Office of DD has offered to enroll families in “In-Home CILA”, which typically provides services valued at about $27,000 a year. However, it can be more. (See article on In-Home CILA below for more information.) Transition
to HBSSP for Participants Leaving the Family Assistance Program An
important characteristic of good family/individual support is the concept of
continuous services from birth to death. In the “old” HBSSP, families of
minor children participating in the Family Assistance Program (FAP) were
automatically “rolled” into HBSSP when they reached the age of 18, assuming
they continued to meet the qualifications. The
Office of DD mailed a letter Dec. 31 announcing that participants in the FAP
with developmental disabilities turning 18 this fiscal year only (July 1, 2002
to June 30, 2003) will be transitioned to the HBSSP. To read the letter, please
check the home page of our website. We will have to continue to advocate for
future years! “Group
Activities" Service Code The Office of Developmental Disabilities has been very creative in working with the committee to design a new service code that will allow enrollees in the HBSSP to participate in a wide variety of community activities such as camps, college courses, and Y memberships. This is hugely exciting and important. The Office of DD deserves big kudos for this effort. This will take effect when the revised rules are approved by the feds. Assistive technology and home modifications under $15,000 over 5 years... what is the point of entry and what are the rules? The
Waiver Workgroup reached a major compromise that felt very appropriate when
agreement was reached to allow participants to acquire assistive technology and
home modifications. This fall, we received many reports that applications were not being processed. This December, the Office of DD has been very energetic in processing applications. Though the immediate issue is resolved, the application and approval process needs to be clear and simple with defined time lines. The In-Home Supports Standing Committee is working with the Office of DD to create a document that will define these issues. Prompt
Payment of Personal Support Workers Prompt
payment of personal support workers continues to be a huge problem, though
really outside the power of DHS staff. They have tried every conceivable
strategy to improve this. It is impossible for individuals with developmental
disabilities or their families to keep workers when they are frequently not paid
for their work until 2 or 3 months after it was performed. Strategies continue
to be considered. The state’s continuing budget problems only worsen this
problem. Paying for Items,
Doctor’s, and Therapists with Medicaid State Plan Card This, of all the issues, may be the most frustrating. One of the great strengths of the “old” HBSSP was the ability of participants to use their funding to pay for insurance or to pay their doctor of choice directly. They were also able to use funding to buy many items and meds necessary with their funding. Now participants must use their Medicaid State Plan Card for these purchases and may not use their funding for insurance premiums. The
Medicaid State Plan is a program run by the Illinois Department of Public Aid
and driven by many federal rules and regulations. We must educate ourselves and
advocate for better services. In-Home
Supports Standing Committee Membership Status Current membership in the In-Home Supports Standing Committee is now at ten people. It consists of the original Waiver Workgroup plus five more people. Included are seven moms, one sister, the Executive Director of a Pre-Admission Screening agency and the Executive Director of an agency providing service facilitation. More members will be added until the committee consists of a total of sixteen. Efforts are being made to assure good geographic and demographic distribution. As you can see, there
are still many important issues to be addressed. Please share your stories,
concerns and suggestions with your legislators and us. We need your voice! Important
New Legislation Introduced!
Your
Help is Needed!
New
legislation calling for a virtually complete overhaul of the Illinois system of
services for people with developmental disabilities was introduced at a press
conference in Springfield on Tuesday, January 7, by Rep. Lee Daniels on his last
day as House Minority Leader. The first of three separate bills, HB 74, calls
for funding received through Medicaid reimbursement to remain dedicated to
improving and expanding those same services. Currently, Medicaid reimbursement
funds go into the general fund and are distributed throughout the state budget.
The second bill, HB 75, creates the Illinois Disabilities Services Advisory
Committee to oversee implementation of Illinois’ obligations under Olmstead.
Little has been accomplished to date regarding Olmstead in our state. Leader
Daniels also introduced HB 76, legislation that would allow all funding to
“follow the individual: with in the disability service system. This is a huge
step forward in revamping the antiquated, inadequate, and uneven system of
services in Illinois. It will create a system that allows for expanded consumer
choice and will require provider flexibility. The
FSN will be working very hard to support Leader Daniels in advocating for the
passage of this legislation. We have already posted more detailed information
from the press conference on our website under NEWS on the home page. Please
help us to support this much-needed change in policy by writing, calling, or
visiting your state legislators. We need the help of each and every one of you
to make this happen. We were successful in saving the Home-Based Support
Services Program last year when we all worked together and made our voices
heard. We have to do it again. This is a tremendous opportunity to make
changes that are desperately needed here in Illinois. Help
Make It Happen!
On Being Discouraged
This year has been a roller coaster. I don’t know about you, but I’ve experienced panic, despair, confusion, rare moments of clarity, pride, then dismay, and more panic.
In February, we thought the Home-Based Support Services program would be dissolved. In May, we thought we had saved it. We had – but in what form? What did we sacrifice?
I’m discouraged.
Right
now, my instinct is to head for the pillows. Pull the covers up over my head.
Take up cross-stitch again. Do something EASY! Do we dare give up? Who will make the decisions if we are not there? Will they be what we want? What about all those folks who receive no services? Who will fight for them?
This is going to be a hard year. Our new governor, Rod Blagojevich, said in his inaugural address that the State of Illinois is predicting a $5 billion dollar deficit. It won’t stop there. Every time I hear a number, it’s a billion dollars higher than the last one. That’s over and beyond the big budget cuts last year. Will services for folks with disabilities be cut? This year we need your voices more than ever.
Remember, “We can grumble and groan. We can shake our fists at the sky and bemoan the priorities of the State of Illinois. But, if we won’t take the time to tell our stories, who do we have to blame? Only ourselves.”
The
Move Toward Self-Determination With
Family Support Dollars
The
following article is by Cathy Ficker Terrill. Cathy is a survivor of mild
traumatic brain injury and the mom of a teenager with multiple disabilities. She
has been a huge advocate for people with disabilities for over 23 years and
helped write and assure passage of the Illinois Early Intervention Act, the
Family Support Act and the Transition Act. She is the past Director of the
Illinois Council on Developmental Disabilities. Currently, she is the Executive
Director of Ray Graham Associates in DuPage County. Community
service funding is making a transition. Medicaid waivers are expanding access to
long-term supports for adults with developmental disabilities. The configuration
of supports for individuals is also changing with new models for
self-determination. The basic principles of self-determination include freedom,
authority, support and responsibility. Self-determination means that a person
makes his or her own decisions, plans his or her own future, determines how
government money is spent for his or her own supports, and takes responsibility
for the decisions he or she makes. Self-determination has and will continue to
change the service delivery system. In essence, it means the money states
traditionally spent on care in institutions or group homes or for sheltered
workshops is now given directly to the individuals, who, with some restrictions,
get to spend it the way they think best meets their needs. Self-determination offers adults with disabilities, the opportunity to redesign their own life goals with a personal support plan. It works for people who want to have authority and control over their own supports and services as well as to have responsibility for managing their funding allocation. Sometimes when I think of self-determination, I think of the Wizard of Oz. I think of Dorothy on her journey to go home. It was a journey to freedom. Along the way, she met some friends and they supported each other. There was mutual respect and interdependence. The lion wanted courage to make choices and to make decisions for himself. The scarecrow wanted a brain. He wanted the capacity to understand so he could make informed choices. The tin man wanted a heart. He wanted to be able to love and be loved. He wanted friends and supports in his community. Dorothy wanted her freedom to go home, to make that journey with friends and supports by her side. As people with disabilities journey to self-determination, they are acquiring new skill sets. People are learning to speak for themselves and becoming the leaders of tomorrow. People are learning how to get information and use that information to change the system. People are learning that with rights come responsibility and there are many different strategies one can use. People are learning to weave dreams and make those dreams come true. People are asking for control. They want to control their lives and their resources. The
Family Assistance and Home-Based Support Services Programs in Illinois were
created so that individuals with disabilities and their families have control
over their resources. One of the issues that comes up is how to spend those
valuable dollars. What kinds of innovative options are people pursuing?
Some people are setting up micro boards to help make decisions about the
best way to spend support dollars. Select individuals are invited to the table
to brainstorm options for needed supports. Others are setting up micro
enterprises, which are small businesses, which provide income and meaningful
work to the individual. These have ranged from coffee shops at train stations to
managing vending machines to pet sitting. Some communities have
community-learning centers, which serve as a base for volunteering as well as
paid employment. Individuals pay a monthly fee to be supported in a combination
of employment, recreation and volunteer opportunities. Some individuals are
using their resources to contract with an independent job coach who helps to
find employment as well as support the individual on the job. There
many options available to people who are willing to think outside of the box. It
is important to look at options in Illinois and in other states. Take examples
of best practices and see if they are a fit for you. Some people will always
want traditional services because they provide continuity, relief and exist.
Others will choose to use their support dollars in a more individualized manner.
That requires more planning, organization and follow-up on the part of the
family. Families need to have a good budgeted plan with back up provisions for
emergencies. These family support dollars allow the luxury of creativity. People
can partner with park districts, elderly services, junior colleges, and others
to expand the concept of supports into the community. It is an excellent way to
help individuals build social capital in their lives. What Is “In-Home CILA?” How Do I Get It? Many
people in the Home-Based Support Services Programs (HBSSP) are now finding that
they do not have enough funding to do what they were able to do before the July
1, 2002 changes. These are people
who were accessing Office of Developmental Disability (not waiver funded)
services as well as HBSSP. The
Office of DD is offering these people a chance to move into “In-Home CILA.”
CILA is an acronym that stands for Community Integrated Living Arrangement and
is also “waiver” funded. Many
people think of CILA and think of group homes.
However, It is possible to access CILA funding for folks living in their
own homes or with their families. You
may choose to transfer from HBSSP to “In-Home CILA”.
However, you may also apply for “In-Home CILA” if you are not in the
HBSSP. Application for ”In-Home CILA” is made through your local
Pre-Admission Screening (PAS) agency. You can identify your PAS agency
at http://www.dhs.state.il.us/officeLocator
or call
312-814-2735 or
217-524-2515. A
Few Facts: 1.
The
funding (also referred to as “the award’) goes to the agency not individual.
The agency has control of services. The family loses flexibility and control. 2.
The
individual/family also loses flexibility in its service options. For instance,
many people would prefer to participate in activities other than developmental
training. 3.
The
services lose accountability. Because the agency receives payment in the form of
a grant up front, there are no consequences if services are not provided or
provided poorly. The following chart illustrates funding typically available through “In-Home CILA”.
Family
Support in the New Economy -
FSN
Task Force Members Attend HSRI Conference in Chicago The
National Center on Family Support - Human Services Research Institute hosted the
first of three national conferences in Chicago on October 14 and 15. Members of
the FSN Task Force attended to gather and share information with other family
support advocates. The conference, entitled “Family Support in the New
Economy”, focused on the changes in family support nationwide that have
occurred as a result of fiscal shortfalls and the need for states to capture
Medicaid funding. There was also an emphasis on creativity and the need for
innovation and resourcefulness in restructuring supports within the guidelines
imposed by these changes. Our
Task Force members learned that the issues we are facing here in Illinois are
the same issues family support advocates are facing across the country. We all
need the Medicaid dollars to fund services and supports but have difficulty
reconciling the restrictions with the principles and best practices of family
support. Articles on these important issues authored by several of the HSRI
presenters mentioned above have been included in this newsletter. For more
information on the Human Services Research Institute, you may visit their
website at www.familysupport-hsri.org. Why
We Can’t Say NO To Medicaid From
Robin Cooper – National Association of State Directors of
Developmental Disabilities Services Financial:
There’s no other new money. Ethical:
People are on waiting lists. Political:
Unmatched state dollars are vulnerable. We may lose it all, as without Medicaid match, family support budgets seem very small and very easy to cut. NO
ONE DESERVES TO BE HURT - The
following information is from a pamphlet published by the Office of the Attorney
General of Illinois. People
with disabilities are at a higher risk of abuse, neglect or financial
exploitation than people without disabilities. To ensure that people with
disabilities who are victims of abuse, neglect or financial exploitation get the
support they need, call for help. TYPES
OF ABUSE Physical Abuse Willful Deprivation Sexual Abuse Emotional Abuse Intimidation
Isolation Financial Exploitation Neglect INDICATORS OF ABUSE, NEGLECT OR FINANCIAL EXPLOITATION
To
report abuse, neglect or financial exploitation in a home (domestic
setting), community program, or state operated facility, call: Office
of Inspector General Department
of Human Services 1-800-368-1463
(Voice/TTY) To
report abuse, neglect or financial exploitation in a nursing home, call: Department of Public Health: 1-800-252-4343, 1-800-547-0466 (TTY) To report abuse, neglect or financial exploitation of a child,
call: Department of Children and Family Services:
Department
on Aging 1-800-252-8966
(Voice/TTY) (8:30
a.m to 5:00 p.m.) 1-800-279-0400
(after working hours and on weekends)
The
Bank Is Broken.
Can You Help? We’re running out of money. It’s true. At the end of June, our grant from the Federal Administration on Developmental Disabilities will be up. For the first time, we’ll be working off our own resources alone. We need your help. Have you joined the Family Support Network? We mail our newsletter to over 4,600 people. Yet, we have only 343 official members. A handful of these are scholarships. Since July 1, 2002, we have received $3,755 in dues and $3,411 in donations. It costs us over $3,000 in printing and postage alone to mail one edition of our newsletter. That does not count the staff time in writing and layout. We strive to mail three newsletters a year. Of
course, we also have staff to pay. As
much as our staff is made up of passionate moms who have kids with disabilities,
we can’t expect them to work for free. They
have bills to pay, too. Then there are all those pesky business expenses;
telephones, computers, copy machine, website maintenance, and office supplies.
The list goes on. We are
busy applying for new grants. But,
it’s hard times and they’re few and far between. Soon we will be making hard
decisions. Do we stop mailing our newsletter to all but the folks who
have decided to become members? Do
we close up shop? Do we lay off
staff? You’ll
have to decide. Do you believe it is important that people with disabilities and
their family members have a voice in the decisions that affect them? Do you
believe we have made a difference? We need your help now. If you have not, please become a member. Please send that extra donation. Please ask your friends and family to make donations. Do you have a “connection” with a possible large donor? Please ask them. Large donations, small donations, memberships. Our future is in your hands. Are we important to you? Please help. Welcome! New
Members Elected To The FSN Board Of Directors The FSN recently elected the following new members to the Board of Directors! We are thrilled to have you with us and are looking forward to working with you to improve the lives of people with disabilities in Illinois! Thank you for your commitment and dedication to our organization! Sue
Halloran – Chicago Cindi
Swanson – Naperville Chuck
Nilles – Brookville Misty
Campbell – Carbondale Tracey
Holder – Peoria Linda
Prewitt – Springfield Lisa
Lukens – Johnston City
|
||||||||||||||||||||||||||||||
