A Time to Thrive - Building Pathways to Empowerment

March 11th, 2010 by John Dickerson

The response to the announcement of our Building Pathways to Empowerment campaign has been so reinforcing.  The offers of help, both personal and financial, are tremendous.  Families and self-advocates have called and their excitement is contagious!  

A parent who serves on our board shared with me that it is so important for us to get the message out that we are not simply trying to survive this crisis -  we are finding and working towards new ways to thrive. 

A mother shared with me that she certainly could do with less and would be glad to - but wants to make sure there is less bureaucracy in the system as well.  

Provider response is also positive - providers are ready for change.  At a meeting of  the Indiana Conference of Executive Directors of Arcs, (ICEArc) Directors said that they clearly see the need for change and the value of redefining outcomes to focus on relationships and happiness.  They also see the need to not wait for the state to begin saving money.  One of our chapters has identified that just within their agency over $4 million dollars a year of savings can be made.   

In an interview with a Fort Wayne newspaper yesterday I laid out critical areas where savings can be captured - housemates, sensible approaches to serving people with high costs, and administrative reform to reduce bureaucracy.  We will link you to this article when it runs in the Fort Wayne paper. 

Our goal is get the word out to the general public through at least 100 interviews with newspapers, radio, and television between now and November.  Sally Morris, The Arc’s Assistant Director of Public Relations, is coordinating a new effort with communication staff at our local Arcs.  If you have ideas or want to help, please contact Sally at smorris@arcind.org. Mark Kevitt, The Arc’s Director of Program Services, is serving as our “Campaign Manager.”  Please contact Mark with any ideas or offers to help at mkevitt@arcind.org.

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Building Pathways to Empowerment

March 5th, 2010 by John Dickerson

Building pathways to Empowerment

While listening to a news show this morning I had the chance to listen to someone I consider one of the really smart people in the world dealing with our economy, Thomas Freidman, of the New York Times.  He was saying that whether or not health care reform passes, this is the last chance for a very long time for the American people to get a new slice of the pie.  After this debate is over, virtually everything we do is all about building a bigger pie tin that builds our economy.

I think he is absolutely right, and it is something that is at the center of the new effort launched today by The Arc of Indiana.

This economy and the resulting impact it is having on education/special education, health care and programs for people with disabilities, is at a critical crossroads.   We can rail against the cuts and play defense and work to lessen the cuts - which might be successful to a degree - but in the end we are fighting a losing battle and in many ways abandoning people waiting for services who are desperate. 

The Arc is starting out on a new path, one that starts from the premise that we can reinvent what it is we want as a product and what it is that addresses the new realities of today’s economy, while also focusing on the essential and fundamental values of personal choice, individual empowerment and seeking meaningful relationships. Indiana’s service system for adults spends $1 Billion dollars a year - much of it for things people do not feel add value and fall into the category of bureaucracy and paperwork.  We need to streamline, remove barriers and needless buearucracy and allow people to get back to what is best for people.

This change will need to involve what consumers - families and self-advocates- want and need, providers in what they provide, and government in how they deliver, pay for and administer these services.

It is a critical time for Indiana. Perhaps no other time in my career has been so challenging.  But in talking with families, self-advocates and providers in recent weeks, this also can be liberating.  We have always been the visionarys who sought a better way, there is no more better time to do that again than right now, and if not us, who. 

We hope you will join with us. Keep informed through all the electronic ways available on our website.  Join us at meetings we will be organizing around the state. Watch and listen to us on radio shows and television news programs. Read about this campaign in local newspapers.  We will be reaching out and speaking everywhere we can to share this new message.  Thank you for all you do every day.  We look forward to you joining us on this new pathway.

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Did Federal Stimulus Work? For People with Disabilities, Yes

February 18th, 2010 by John Dickerson

Did the federal stimulus work?  One can only wonder how people in Indiana would have been impacted had we not had the stimulus program to avoid massive cuts in education and Medicaid.  An article in the February 18th issue of the Indianapolis Star on this topic mentions only briefly that stimulus funds kept teachers employed and provided Medicaid health benefits.  Indiana expects to receive a total of $1.4 billion in Medicaid stimulus funding, not $1.4 million as reported in an early edition of the Star.  These funds are critical to the lives of Hoosiers who are elderly or disabled, as well as to the staff that serve them. 

Home care for people with disabilities and seniors is a key example.  Stimulus funds provided an increase in the federal contribution to Indiana’s Medicaid program, allowing thousands of vulnerable Hoosiers to receive the supports they need to live in their homes. The people who serve them continued to receive a paycheck, pay taxes, support their families and not end up on Medicaid and/or unemployment themselves.

It is quite amazing that politics continues to be played on the stimulus and other critical issues, rather than all sides pulling together to work to address the tremendous problems facing our state and country. 

The Arc of Indiana is committed to finding better and smarter ways to utilize federal and state funds that are so important to the people we represent.  We understand that we must all work together to develop new approaches that use tax dollars in the most effective way and direct help to those most in need.   We have been working for several months in partnership with leaders of provider agencies to push for the implementation of real reforms that can save significant funds and allow people to continue to receive vital services.  Without the federal stimulus dollars, we would be in a far different position - scrabbling to react to cuts in funding and services beyond those that have occurred, rather than working towards more innovative approaches to using scarce resources.     

While it is fair to ask if the stimulus worked, political noise should not be allowed to drown out reasonable voices that seek to rebuild our economy while at the same time take care of vulnerable citizens.

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Tea-baggers, Deficits and Disability Policy

February 3rd, 2010 by John Dickerson

One of the great criticisms on the “war on terror” is that we are always planning to stop the last attack  from happening again.  It may be a truism for more than the war on terror.

As the state, advocates, providers and consumers look to use existing funds more efficiently, control costs, redirect resources and, at the same time, work to meet the ever increasing needs of people - we too may be guilty of “stopping the last attack” instead of thinking ahead.

This week the topic of federal deficits is capturing attention, including the possibility of creating a new federal deficit commission. Key to any discussions such a commission has will be the topic of entitlements. We can be certain that they will not be looking to expand entitlements, which consume the overwhelming portion of federal resources, but rather, will likely focus on how such entitlements can be reduced.  Social Security, Medicare and Medicaid are the big three, all of which people with disabilities depend on.

Much has been written about the tea-bagger movement - some praising it and some ridiculing it for the fringe elements involved.  But it may be missed by many that people in the middle are fed up with business as usual and “spending that is out of control.”  People are worried about deficits and what that means for them and their children.  

What brings me to this point?  This week I will spend hours on behalf of people with developmental disabilities and their families working with FSSA on how Medicaid is used to fund very important services through Medicaid Waivers.  Many times I feel the argument is over nickels and dimes. For example, there is currently a great deal of discussion on spending on supported employment, even though it represents only 3/10ths of one percent of the state’s Medicaid Waiver budget.  At the same time, there is little focus on residential services which consumes 90 percent of the budget - using a model developed 20 years ago.  That model depends on a work force of direct support professionals - people who are expected to provide support and care to vulnerable people while adhering to strict compliance to regulations, yet who make so little, many at $8.75 an hour, that they often qualify for food stamps. 

This week I will also take part in a national call to help design a national campaign to end waiting lists throughout the country.  Such an effort will take tremendous resources - particularly if states keep following existing models and systems for providing services.   

Last week, State Senator Luke Kenley told us that to get through these times it will take sacrifice.  He is right, but I do not think he sees sacrifice in the same way I do.

Too often the discussion of sacrifice and entitlements comes back to support for cutting “your” entitlement, but not “mine.”  That thinking will not help anybody. 

We all must work together to get through these difficult economic and political times.  Sacrifice will mean rethinking what we can and must do, breaking old molds and expectations and more wisely investing through the taxes we all pay.

It will not be easy and it will not happen unless politicians begin working together - working not simply to win the next election, but working together for all the people of this country.  

I don’t have much in common with the teabagger crowd, and I am not even sure if the people The Arc represents would be welcome at their rallies.  But I do know that if we do not start really working together, rather than fighting with each other, we will all lose.

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The Problem with the First Steps Co-Pay Issue

January 29th, 2010 by John Dickerson

Last week The Arc of Indiana testified against a proposal to discontinue First Steps services to infants and toddlers with disabilities if their parents have fallen behind on making co-payments for services.   Today, a good friend and strong advocate for people with disabilities asked “Shouldn’t people pay something for First Steps services if they can afford it?”  Seems to make sense, or does it?

The Arc of Indiana has always recognized personal responsibility.  As a family-based organization we know firsthand that Hoosier families who have a loved one with a disability willingly and lovingly take on the responsibility of providing and caring for their family members.    In fact, the overwhelming majority of families are the only caregiver for their son or daughter and receive no services from the state system.  Study after study documents the unseen, extra costs families incur in providing for a child with a disability. Yes, we recognize personal responsibility and know families contribute in ways no government agency will ever understand or appreciate.

So why are co-pays for First Steps services an important a topic?  There are just two reasons for co-pays.  The first is the belief that families “who can afford it” should pay some amount of the overall cost of services their infant or toddler with a disability receives.  Co-payments can range from $24 a month to $960 a month, depending on the income of the family.  However, a bill now moving through the Indiana General Assembly SB 35 would remove the maximum amount a family must make in co-payments.  If SB 35 passes, those amounts will increase.   

Co-payments currently generate, we are told, $1 million a year for a program that spends over $50 million.  Once you deduct the cost of collecting that - and people argue about the true cost - perhaps somewhere between $900,000 dollars to $0 is actually generated - if you consider the cost of staff time to calculate what a family’s co-pay should be, billing, processing payments, rebilling (often because a family is waiting for insurance payments), etc. etc.  Economically, it makes little sense; but we lost this argument long ago to people who felt, “Families should pay!”

The second reason for co-pays is more subtle.  The co-pay forces families to decide whether or not they can afford for their child to receive a service or services.  Higher co-pays lead families to say “no” to a service their child may very much need.

The New England Journal of Medicine published a study recently that showed a dramatic reduction in Medicare doctor visits when co-pays were raised.  The study also documented this led to more hospitalizations and higher, not lower, costs.

We believe the same is true for First Steps. Requiring families to make co-payments may limit the critical services that will have life-long cost implications for children.  It may make some feel virtuous today for “saving money” but the cost tomorrow in human and economic costs are staggering.

The Arc of Indiana asked the Indiana Family and Social Services Administration for data on the current co-pay proposal.  You can find their answers at: http://www.arcind.org/news/?naid=31

We will continue to raise this issue - we hope you will join us.

A second public hearing for proposed revisions to the First Steps, Early Intervention Program, will take place on Monday, February 15th at 3:00 p.m. in the Indiana Government Center South Auditorium.   We encourage anyone interested in the First Steps Program to come and participate in the Public Hearing.  Families who have gone through First Steps and have stories to share about billing problems or concerns, insurance issues, etc, should come and discuss their experience.  Families should also share the positive results that First Steps has had on their child’s life.  Children experiencing developmental delays should not fall victim to the state’s financial crisis.  Other alternatives for collecting the delinquent co-pays need to be explored.

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FSSA Seeks Input on New Hybrid System for Delivery of Benefits

November 19th, 2009 by John Dickerson

The Arc of Indiana is working with the Indiana Family and Social Services Administration (FSSA) on a hybrid model to replace the welfare modernization project that was being developed and was only paritially implemented by IBM. 

When Governor Daniels made the decision to end the contract with IBM, FSSA Secretary Anne Murphy began working to develop a system that takes the best of the modernization project and the best of the old county office system.  This model, referred to as the Hybrid, will be based on reestablishing a county presence to help people access Medicaid, Food Stamps and TANF - Temporary Assistance to Needy Families.

Kim Dodson, The Arc of Indiana’s Associate Executive Director, has been very involved in this discussion both as a representative of The Arc, and as  President of the Indiana Coalition for Human Services. 

This task will take the input of a lot of people.  FSSA has asked for comments from those involved with the old system as well as the new. 

Suggestions for a new Hybrid system to deliver services.  may be sent via email to hybridinput@fssa.in.gov or by mail to:  ATTN: Hybrid Input, FSSA, 402 W. Washington Street, MS 25, Indpls. IN 46204.

The Arc of Indiana appreciates the efforts of FSSA Secretary Anne Murphy and Director of the Division of Family Resources Cathy Boggs.  We have offered our help in any way we can.

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Employment for People Receiving DD Medicaid Waiver

October 29th, 2009 by John Dickerson

The Indiana Family and Social Services Administration (FSSA) recently made changes to the Developmental Disabilities (DD) Medicaid Waiver.  Two changes were made to the waiver that directly affects people with developmental disabilities and their ability to work.  FSSA felt strongly that these changes needed to be made, despite The Arc’s concerns.  The changes include a one-year time limit on prevocational services (a facility based program for people that are not in sheltered work) and an 18 month limit on supported employment follow-along.  

It is important to note that changes to the DD Waiver will not affect state payments for those in sheltered work.  That continues as it always has.  The key to being in sheltered work versus prevocational is the ability of the person to be earning above 50% minimum wage (sheltered work) or earning below 50% minimum wage (prevocational services).

FSSA had two concerns regarding prevocational services funded through the DD waiver. They felt it was an audit exception for Medicaid to pay for prevocational services in a never-ending way.  Their interpretation of the service - which is reimbursed at a level nearly twice that of other day services - is that the higher payment was established to provide more intensive services to prepare someone for work.   Therefore, in their minds, it was appropriate to require a time limit for this service - after a year the person would either be ready for work or would move to another day service.  FSSA felt that by not imposing a time limit they could be liable to pay back the federal government, which they could not afford to do.

On this issue the state was willing to look at a paid work program, but they could not go along with Medicaid paying for the service on an open-ended basis.  They agreed to work with us over the next 90 days to find alternatives that would keep folks served.

Regarding Supported Employment Follow Along (SEFA), FSSA felt after 18 months of support at a rate of about $38 an hour for follow along, people could transition to a new service of Work Place Assistance, at a lower rate of $24 an hour.  This was to recognize that people should need less intense support after they begin mastering a job. 

Both The Arc of Indiana and INARF worked to exclude these changes to the DD Waiver, but FSSA felt they had to keep them in.  However, FSSA officials have agreed to work with us on both of these issues, as they understand why we have concerns.

In addition to the two changes we are specifically concerned about, we should also note that the DD waiver now includes a new service, Facility Based Support.  This new service was requested at the sessions FSSA held to solicit input on changes to the DD waiver.  It is not intended to be a replacement for any other service, but rather is intended to provide a “safe haven” for someone who needs a place to go between services or a job.  This service would provide supervision, but would provide work related or rehabilitation services.   

On October 1, 2009 we sent out a joint memo to all INARF and ICEArc members (the executive directors of our chapters), laying out our plan to work on this and sharing our great concern regarding changes to the waiver that impact employment.    

We established a joint work group with INARF that is meeting in two subgroups to address both issues. 

Our goal is to develop a clarified approach to employment that ensures a range of employment supports, and that provides supports and services that cover a variety of options that reflect the choice of the individual.  The members of these groups are working aggressively to develop solutions to address these issues within the 90 day timeframe.

The first people that could be affected by time limits would be those whose Medicaid waiver is scheduled to be renewed at the end of October.  That is one reason why we want to have a plan in place within 90 days that includes FSSA submitting an amendment to the DD Waiver.  

We hope to have a joint proposal that will address these critical issues to FSSA by mid November.  If accepted, it would then be submitted to the federal government for approval as an amendment to the DD Waiver before anyone was affected by the new time limits.

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Federal Stimulus Benefit to People Served and Employed Through Medicaid Funded Programs

October 16th, 2009 by John Dickerson

The Arc of Indiana appreciates the difficulty of quantifying how many jobs have been saved or created by federal stimulus dollars.  Governor Daniels and Representative Pat Bauer are correct in being cautious to not overstate the impact.  However, while it may be difficult to statistically measure the impact, the positive results of federal stimulus dollars that have gone to stabilize Indiana’s Medicaid program can been seen each and every day.  

Medicaid provides health care to people with disabilities, supports to families caring for loved ones at home and supports to adults with disabilities that allow them to live in their own home.  Medicaid also funds care to people who are elderly or disabled in nursing homes. 

Statistics do not tell the story of the little girl who continues to receive the home nursing care she needs to live at home with Mom and Dad, the young man with Down syndrome and his roommate with cerebral palsy who continue to have support staff that allows them to live in an apartment, or the caregiver who got a paycheck on Friday and will make this month’s mortgage payment.   Read the rest of this entry »

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Ground-breaking conference set for October 1st

August 24th, 2009 by John Dickerson

The news is filled with town hall meetings where the dialogue is hot and at times a bit frightening for people.  It is clear that health care reform has touched a nerve with those who both want it and those that are against it.  Few topics have generated such intensity in recent times.  Many more feel that finding common ground on many of the challenges facing us is getting more difficult.

 

Many feel this intensity reflects the great uncertainty many people are feeling every day.  Jobs are gone, retirement accounts have been devastated, and people caught in the middle worry about their aging parents, their children and their own security.

 

Rather than raising our voices, The Arc believes we can use technology to help us find what really is important.   

 

On October 1, 2009, The Arc is going to do something we have never done before.  We are going to ask people to use the state-of-the-art technology to ask families, self-advocates, and professionals the 60 most critical questions that we could fashion.  Covering every area from these critical questions will be answered by every attendee, breaking out the responses and sharing with everyone who attends, how people really feel about the critical choices people need to make.

 

Topics will include early childhood, education, health care, employment, family support, living in the community, future planning and guardianship, cultural competency, post-secondary education and training all will be covered.  We have had a group of families professionals, and self advocates working all summer to ask the right questions.

 

Nothing has ever been done to ask so many, such critical questions and provide near instant feedback.  And its affordable.

 

The registration for this ground-breaking event is just $15 for self-advocates, $19 for families, and $35 for professionals and that includes free parking at The Indianapolis Zoo with shuttle service.   That also includes lunch with special guest Tom Pomeranz!

 

Make your voice heard.  We hope to have the largest gathering of consumers, families and professional together for this incredible event. For more information go to www.arcind.org.  

 

Be there for something unlike anything we have ever done.  This is not the time for yelling at each other, but forging some common ground on what is important and where we need to go  I hope to see you October 1st.

 

 

 

 

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Fiscal Crisis Is Real - Federal Stimulus Saves Castatrophe but Challenges Remain

August 3rd, 2009 by John Dickerson

The Indianapolis Star recently reported that Indiana has spent received and spent $1.1 billion of federal stimulus funds.  Of these dollars, $900 million of that funding has gone to stabilize Medicaid. 

The real world impact of that is that the stimulus funds which last through 2010, have helped the state avoid massive cuts in services to Medicaid recipients.  Without these funds, one can only speculate what would have happen.    Many are wondering, what will happen if when these funds are exhausted.

The state ended the fiscal year with $55 million in the checking account that pays the state bills.  If  revenue does not increase – sales tax, personal income taxes, corporate taxes and gambling revenue – there will be further pressures on the on the system of education and human services.

Recently one of the highest regarded new initiatives of FSSA, INTRAIN, the training of Direct Support Professionals through Ivy Tech and IU, was summarily canceled on July 31.  This project had made real impact in the lives of people and was just getting off the ground.

We understand these are extremely difficult times.  We also understand we have to make tough choices. Yet we must make very careful decisions about how we get through this together.  We; advocates, families, providers and the state have to work through this together – not unilaterally and not without considering the alternatives.

We are working hard to address these issues and hope you will use these pages to stay involved and add your voice to the call for responsible actions.

 

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