Debt Ceiling Deal and Disability Policy – Stay Tuned and Get Involved

August 4th, 2011 by

Now that the debt ceiling “deal” has been reached and the media circus has temporarily left town, we are left to figure out what really happened and what it means for disability policy and people with disabilities and their families.  It will be weeks as more details unfold.    

One thing we do know – republicans refused to look at revenue – including reducing tax subsidies on big oil – but did consider and approve eliminating loan subsidies for graduate students.  While one was considered a tax increase on big oil companies, the other was not considered a tax increase on graduate students.  

While all of this was going on, the failure to act on the Federal Aviation Administration – a political battle over unionization of airline and railroad workers and subsidies to rural airports – has already led to the layoff of up to 40,000 construction workers and thousands of FAA employees.  In addition, since Congress went on a month-long vacation, lost airline ticket taxes will exceed $1 billion dollars for the time they are on vacation.  

What would $1 billion do to provide support to families?   That amount would allow nearly 200,000 families in desperate need to get family support, respite or behavioral therapy for a year.  Perhaps  that $1 billion should be deducted from the individual budgets of every member of Congress by lowering their staff budgets and personal salaries proportionately.   This is not new taxes, just a failure of Congress to do its job to keep the government running.

But, back to the Debt Deal.  The next step will be meetings of the “Super Congress” – 12 people will have to reach a new deal by Thanksgiving  and get Congress to vote on it by December 23rd or automatic triggers will kick in.  All of this ignores the core problem facing us – jobs.  

At a time when unemployment is fueled by a lack of hiring, and companies are not hiring because people are not spending and creating a demand for products and services, we are entering a time of austerity that will reduce demand even further.  There is no doubt that a plan is needed to reduce the deficit, but I am afraid this is not it.  

The result?  For the next two years anything funded with federal discretionary money will be on the table, and close by on the table will be entitlements like Medicare, Medicaid and Social Security.  We need reform and we need restructuring, but we also need new revenue.  It may not just be the wealthy (and of course everyone had a different view of who is wealthy, and usually people see that as those who earn more than they do) who need to pay higher taxes to fuel our way out of this.  We no longer can expect something for nothing.  And it will take political will – not just the political will to get elected – but the political will to do the right thing for all Americans.  

People with disabilities and their families cannot be spectators in this process. If we remain silent we will be pawns sacrificed by others who do not share in the sacrifice.  We need to be active, informed and involved.  For some politics is a dirty word.  But we need to be involved in both parties, in every opportunity we have, to add our voice to this debate. 

Take a step toward getting involved today.  Visit our Legisalative Action Center where you can sign up to receive Action Alerts and learn how you can be involved in the political and policy making process. 

The media circus and members of Congress have temporarily left the building, but it will be back soon, along with your congressional representatives.  Like it or not, you need to be involved.  The Arc will be there – and we need you to be there too.



The Debt Ceiling Vote – What Does it Mean to You

July 11th, 2011 by

We are currently watching the highest stakes game ever as members of Congress and the White House determine who will blink first in the battle of raising the Debt Ceiling.  Both Democrats and Republicans have agreed  that spending must be cut - yet they differ on how.  Will Congress only cut spending, including spending on people with disabilities, or will Congress seek a balanced approach that looks at raising revenues – including taxes.  

Everyone gets the problem, and most I talk to see an answer that is balanced.  Yet the lines are not to be crossed on revenue.  In fact, despite record profits, some describe eliminating $4 billion dollars in oil company “benefits” as a tax increase!  $4 billion dollars a year would provide funding for 100,000 families a year on the waiver or Family Support for 1 million families.   Or on the other hand, protecting oil companies “benefits” could mean $4 billion dollars more in cuts to those same programs.   

This is not politics as usual.  Beyond the spending and revenue picture, the question of the entire US economy and the world economy sits in the balance. 

Will Congress meet in the middle?  That may indeed depend on how you and I respond.  There is still time for us to speak up. 

Call, email, and if possible visit with your member of Congress – soon!  How well we communicate may make the difference – and never doubt that your voice does count.

For complete information on how to contact your members of Congress, visit The Arc of Indiana’s Legislative Action Center.  If  you do not already receive Legislative Memos and Action Alerts – be sure to sign up today!



Put a Face to Proposed Medicaid Changes – Make Your Voice Heard – NOW!

July 6th, 2011 by

Don't Cut Our LifelineThe ongoing debate in Congress on Medicaid puts the future of so many individuals and families at stake. This morning I heard a member of Congress say that it is time for Washington to take a “hit” by getting Medicaid under control.  The real truth is, if Medicaid is block granted or across the board cut are made it will not be Washington that takes a hit.  The hit will be taken by real families and people with disabilities who will lose their life line to critical services and supports. 

The Arc is working hard to put a face to how changes in Medicaid will in fact impact real people. Your voice must be heard.

Mike Carney, Executive Director of KCARC, local chapter of The Arc in Knox County, recently brought self-advocate Ron Devine and his sister Kristy Harting to DC to meet with their congressional delegation as part of a growing effort to make sure congress knows this issue is not just a theoretical discussion but something that affects real people who live in their districts.

Today four families join The Arc’s CEO Peter Berns and Public Policy Director Marty Ford in a meeting with key staff at the White House to share how Medicaid cuts would affect their families – an important discussion and opportunity as President Obama and Congress continue deficit reduction negotiations.

You can do the same thing without traveling to DC.

Call your Senators or Member of the House of Representatives
Call the Capitol Switchboard to reach your Members of Congress: 202-224-3121

Sign Up for The Arc’s Action Alerts
Act quickly when you receive them!

Make an Appointment with your Elected Officials
Call your elected officials for an appointment to discuss what Medicaid means to you. Find out when your Member of the House of Representatives will be home from Washington, and call his or her district office to make an appointment. Stress with the scheduler that you know that budget cuts could come up for a vote this summer, and you want your voice to be heard!

Attend a Town Hall Meeting
When Members of Congress are back in their districts, they often hold town hall meetings. Call their district offices to find out when the next meeting is so that you can attend and share your story directly with your Representative.

Invite your U.S. Senators and Representative to your local chapter of The Arc
Invite them to join you at places or events where they will be able to meet with people with disabilities who depend heavily on Medicaid. For example, invite them to a supported housing setting or apartment supported by your chapter(s). Seeing firsthand the people who depend on Medicaid-funded long-term services and supports can have a powerful effect on Members of Congress and can help to dispel many of the unfortunate misperceptions about the program (for example, that it serves people who don’t really need it). If possible, invite them to a chapter event that’s happening during the recess where they may meet and talk with people who depend on Medicaid for services.

Write a Letter to the Editor
Local newspapers will print letters from local residents on timely topics. Sharing your personal story about how Medicaid is your lifeline to health care and long term services and supports will help people understand why we must maintain the program.

Use Social Media to Spread the Word
Facebook and Twitter are often the first source of news for your friends and family. Use your online network to ask them to get involved in this fight!

Learn More: “Don’t Cut Our Lifeline Medicaid Tool Kit”


But most important – Make Your Voice Heard - Now!



Lesson from the Autism NOW Summit – I am not alone!

June 27th, 2011 by

I am not alone!

We just finished a wonderful weekend at the Autism NOW Midwest Regional Summit.  It was amazing how many times families and self-advocates shared how relieved they were to feel that they are not alone in what they are going through.  You cannot underestimate the power of community and what it felt like for people to make connections.

People from across the region participated – many for the very first time – meeting with other families and individuals with autism and other disabilities in inspiring and uplifting discussions. 

A mother shared with me that she quit going to support group meetings as it left her more depressed than encouraged.  “This is different,” she said, “I am ready to get involved and know it is up to me.”

In these turbulent times, we often find oursevelves faced with very significant challenges.  As one of my early mentors shared with me, ”We often sit and talk to ourselves about our problems instead of what we are going to do about solving them, and that means talking to others.”

What a great reminder of what brought us together, made us grow and what coming togehter will help us continue to do during trying times.



Thoughts on Medicaid Block Granting, The Arc FINDS Study, and A Call to Action

June 14th, 2011 by

At the federal level, discussions continue as to what should be done with Medicare and Medicaid – two of the bigger targets for deficit reduction.  Both are important to people with intellectual disabilities and their families. 

MedicaidStates and the federal government SHARE in the cost of Medicaid based on a formula.  For Indiana, that formula is currently 25% state dollars to 75% federal dollars (thanks to the Federal Stimulus dollars over the last three years), but on July 1, that formula will go back to the old rates of 37% state and 63% federal dollars.  So after July for every Medicaid service, every waiver service and  every group home dollar the state only pays 37 cents and the federal government pays 63 cents. 

IF a block grant is passed, the state would get a set amount – regardless of how many services are offered and how many people are in need.  We don’t know what the requirements would be or how much money a state would be given.  We do know that if this happens everyone will be affected.  We just don’t know how it will work, and neither do those who are proposing a block grant. 

Many proponents cite Rhode Island as a model of how this could work.  I came across a study of the Rhode Island model recently and thought we should share it.  Learn more about the Rhode Island Model.

The appealing side to legislators at the federal level is that a “block grant” can cap the growth of Medicaid.  At the state level it might mean less regulation and mindless bureaucracy to deal with; but, the state remains on the hook for what does not get funded.

For families and individuals with I/DD the Medicaid debate brings more uncertainty in a very uncertain world.  The Arc has a very thoughtful and thorough piece on their website on Medicaid Block Grants.  I encourage you to read, “How will Medicaid Block Grants Impact People with Intellectual Disabilities and Their Families.” 

FINDSAlso today, The Arc US released a report on Family and Individual Needs for Disability Supports (FINDS).  The report, “Still in the Shadows with Their Future Uncertain,” contains important information on key areas impacting people with I/DD and their families, including employment, education, services and supports, and threats on the horizon – including the important issue of Medicaid reform.  But the report also includes a new Call to Action – an invitation to “all people with I/DD, their parents, siblings, other family members and friends, their employers, government, business and community leaders and all people of good conscience to join together in a new movement to promote and protect the rights of people with I/DD to live, to learn, to work, and to participate, along side people without disabilities, in all aspects of community life.”  Please read this important report, and join in this Call to Action.

John Dickerson is the Executive Director of The Arc of Indiana.



OBA Data Shows 20 Percent Reduction in Waiver Funding Over First Two Months

June 10th, 2011 by

Thanks to providers that shared data with The Arc and INARF for our joint study of the Objective Based Allocation (OBA) budget process for Medicaid waivers, we now have good data to begin working with the state to address issues of concern that the data has helped us identify.   

The data shows that there was an overall 20% percent reduction in funding of Medicaid waiver services during the first two months of implementation of OBA.  We were expecting 7% because the rates for services were cut 7%, but the reductions in funding overall were much more significant.  IF a 20% reduction continues there will be nearly $100 million in reduced spending over the course of the year.  

There can be some good reasons for spending reductions – particularly in the area of people finding housemates.  In one instance three women came together as housemates and saved the state over $75,000 a year by sharing staffing costs.  Most importantly, they really like living together.   

We also are seeing problem areas, particularly with children and adults living with family.  If there was one critical adjustment to the framework of OBA we would suggest it is that the budgets of individuals living at home have been cut pretty dramatically and there is the real possibility that people will be pushed into more expensive settings and leave home – something that no one wants.  

The other area we would hope would be addressed is to revisit the rate cuts that were made.  One of the critical areas that we hear consistently is the issue of staff turnover.  When rates are cut wages and benefits are impacted.  Nearly 85% of the waiver costs are staff related.  We would hope that after another month’s data is collected we can convince FSSA to look at the rate reductions and see what can be done.  

We also are continuing to press for more flexibility in the use of the dollars in the day services building block.  We would like to see greater ease to move money around within the capped amount to help people find work and community experiences that will make their life more rewarding.  We also are working to address cases in which people do not fit easily into the OBA grid and need special attention.  We hope savings being realized through the OBA process will allow the state to be more flexible in addressing individual cases.

We often hear about how the state is out of money and Medicaid is the problem – the beast that is destroying state budgets.  Families, providers and state leaders at FSSA are working to make sure every dollar is spent as wisely as possible.  Many are finding ways to make it work; but others are facing great difficulty, and many individuals and families are confused and fearful of how these changes will impact their lives. 

We will be updating this issue and posting results of the data in news articles on our website. To keep up-to-date, be sure to subscribe to our e-newsletter or join us on Facebook.

John Dickerson is the Executive Director of The Arc of Indiana



Doing Better with Less

June 6th, 2011 by

It is not doing more with less …. now it is doing BETTER WITH LESS.   

I recently was at the Board retreat for CDC Resources, The Arc chapter in White, Jasper, Newton and Benton Counties.  Executive Director Mike Cruz shared with the Board that their mantra for many years was to figure out how to do more with less.  “Well,” he said, “we cannot do that any more, so now we have to figure out how to do better with less.” 

Doing better with less will mean finding new ways of meeting people’s needs – often difficult if not impossible given regulations and bureaucracy that make work so complex.  

I shared with them that coming out of our Pathways project – and not said quite so succinctly as doing better with less - is the reality that change is coming from the federal and state level and we will have to find these new ways to do better. 

When I shared that quote with Mike Carney, another local Arc Executive Director, he agreed.  He also said we need to realize that while what we are doing today is good, and perhaps better than we have ever done up to now, it certainly is not the best we can do or the best we will ever be.  

So our challenge, as it has been since The Arc started, is to keep aiming for something better.  If that means changing rules, breaking down the red tape and starting fresh, than that is what we need to do.  People are counting on us.  

John Dickerson is the Executive Director of The Arc of Indiana. 



Make Your Voice Heard in the 2012 Budget Debate

May 16th, 2011 by

U.S. House Budget Chairman Paul Ryan (R-Wisconsin) started the 2012 budget process by getting the House of Representatives to approve his “Pathway to Prosperity” plan.  And while there has been much loud noise both for and against the plan, it is important to not only study it carefully, but also to closely look at alternatives that will be offered.  Unlike the budget bill passed by the Indiana General Assembly, the federal budget bill sets sweeping directions and budget targets – but very little detail.  Once passed individual appropriation bills must be approved by over a dozen committees to develop an actual budget.

In the Senate, a group of six senators – three Republicans and three Democrats – are working on their bi-partisan approach to the budget.  In addition, Vice-President Biden has convened a bi-partisan group to work on the budget.  All working to the same end, but with different priorities.  Mixed into this debate is the question of raising the federal debt limit and whether that should have future spending cuts tied to it or not.   

Medicaid:  Just about every discussion of the federal budget includes a question about Medicaid.  Medicaid is the shared federal and state program that provides health care coverage and long-term care for people who are low-income, elderly or disabled.  Most notably Medicaid supports nearly 95% of Indiana’s services to adults with developmental disabilities – including group homes and the Medicaid waiver program.  Congressman Ryan’s plan would turn Medicaid into a block grant – allowing states great flexibility to manage the program without any federal restrictions.  The Congressman’s plan does not stipulate how much would be in the block grant or what if any restrictions Congress would put on the states.  States will be leery because there is a growing population of seniors and huge waiting lists of persons with disabilities needing services.  This plan does not address costs; it simply shifts the responsibility to the states.   The Presidents Deficit Commission suggested there must be an answer to Medicaid and the open-ended entitlement.  And while not proposing a block grant approach, the plan clearly says Medicaid must be addressed in a new way.

Medicare:  Health care for seniors and many people with disabilities is covered through Medicare.  Central to Congressman Ryan’s plan is the maintenance of Medicare as it is for anyone 55 and older.  It is unclear if this would include current recipients under the age of 55 who are disabled. It also is not clear how this would affect people who currently are considered dually eligible for Medicare and Medicaid.  Medicare does not cover long-term care.  The Congressman’s plan would replace Medicare for people under 55 with a voucher system to buy private health insurance after 2022. Again details are yet to be determined, but in this case it requires the consumer to pick up more of the costs and critics, who do not see how seniors will be able to do that, cite Medicare’s administrative cost of 1% versus as high as 29% for private health insurance companies – who also pay higher rates than Medicare.   Many have suggested raising the age you can get Medicare as a savings strategy, a means-test for Medicare (if you have income above a certain amount you do not qualify) and allowing the federal government to negotiate for the price of prescription drugs, something they are prohibited from doing under current law.

Tax Policy:  There remains a deep divide over the question of tax policy and whether working our way out of this crisis is one of shared sacrifice – or if it will be more on the backs of one group or another. Congressman Ryan’s plan actually lowers the taxes on the wealthiest Americans, and does not address the large payments through tax policy to oil and gas companies and other large business areas, farm subsidies or capital gains.  However, as it does state that the tax policy must be budget neutral, it appears that the appropriations committee will have to address how they would make up an income tax cut to the wealthiest Americans by looking to the rest of taxpayers.

Economic Projections: The budget plan of Congressman Ryan makes certain assumptions about the economy that will be debated extensively.  He projects that if his plan is followed unemployment will drop to 2.8% – a level that critics say is impossible to reach.  He also projects the purchase of private homes will skyrocket and bring home ownership to levels higher than what was achieved at the height of the housing boom.   .

Cutting Spending: The Ryan plan clearly cuts domestic spending to levels that will appeal to those looking to that as their primary goal.   Many people feel that spending – not revenue – is the only problem and spending must be cut to ‘affordable’ levels.  The devil of course is in the details.  Critics will say that the spending cuts proposed will cost jobs – 700,000 to 1,000,000 jobs lost – while proponents will say that this plan will actually grow over
1,000,000 jobs.

This is a debate where none of us can stay on the sidelines.  We all will have to become more aware and educated on the issues and speak up - and in doing so respect the positions of others.  One of the great failures in public policy today is the lack of a civil discussion.

This is a marathon; not a sprint.  You can and should add your voice to this process.  The Arc has made it very easy to contact Indiana Senators Richard Lugar and Dan Coats with your thoughts.  Simply visit The Arc’s Legislative Action Center and in your own words share your priorities for the budget and what in particular Medicaid means to your family.  

Be sure to continue to connect with The Arc to keep up to date with the budget process. 

Visit us  to join us on Facebook, following us on Twitter, and to sign up for our E-Newsletter and Action Alerts. 

In the Pathways section of our website you can talk with one another in Forums for Family Members, Self-Advocates and Providers; and in “Innovations” you can upload videos and photos or post stories to share with others ”things that work” for you in supporting individuals with disabilities. 

Thanks for all you do.



Creativity, Flexibility, Time Key to Finding “Right” Housemate

March 18th, 2011 by

As The Arc travels to Pathways Forums around the state we are gathering great ideas from participants and hearing very real concerns.  One area of concern is the issue of finding housemates.  When people have had bad experiences with housemates, and believe they have no choice in who a new housemate will be, they are angry and fearful.  When people have found the “right” housemate, we hear positive stories of how the “right” housemate makes a positive difference in their loved ones lives.  

Why is this issue so important?  We estimate that savings of $20-$25 million per year can be achieved if the 1,000 people estimated to be living alone with 24 hour supports can find just one housemate to share costs.  That savings is important on two levels, maintaining the overall fiscal integrity to everyone the state serves and allowing for modest growth for emergency cases of people needing supports.

Two cases come to mind.  I sat for nearly an hour with a tearful 71 year-old sister who is deathly afraid of her sister having to have a housemate again.  Three different housemates over the years had not been a good fit, and the last housemate terrorized and hurt her sister. She believed that the next housemate would be whoever the state, her provider and case manager told her it would be, and would once again not be the right person for her sister.  Yet, when she looked around the room at all the people needing help she agreed to think about the right qualities of a person to fit in with her sister, and we shared that she and her sister should in fact have choices in finding the right housemate. 

In this effort to find savings we must remember people.

Another mother called us, quite upset that The Arc was supporting the need for  housemates.  Again, when we talked it through her concern was that her son, who has severe physical disabilities, had his back broken when his previous housemate got angry and threw him from his wheelchair.    She too was understandably upset when she was told that she would just have to deal with whatever person come along to be her son’s next housemate. 

The Arc worked hard with Self-Advocates of Indiana to develop a Housemate’s Guide.  We believe that if the guide is followed, the right matches can be found and good things can happen for individuals, while at the same time conserving financial resources.  If it is done the wrong way and the wrong people are put together, as the sister and mother experienced, bad things will happen. People cannot be put at risk. 

An important piece of making the transition to finding housemates work is giving people time.  The state will give individuals up to a six month budget extension to find the right housemate or housemates.  It is important that providers, case managers, families and individuals ask for and use that time to proactively seek the right match. 

Another conversation I had shows how it can work.  And this one was complicated.  A young woman, who I will call Jane, was living with one other person and neither of them got along.  Jane’s housemate wanted to move and live with two other women she really liked, which also meant changing providers.  That would have left Jane living alone.  Luckily, Jane had a friend that also needed a housemate, but she also had a different provider.  The two women and their families agreed to go with Jane’s provider, but still needed to find a third housemate.  A woman in a group home knew both women and after meeting with both families it was agreed the three would be a good fit.  Making it all work took time, compromise and creativity – but in the end it worked out and now six women are all living with people they like.   

These are not usual times.  To make it through, the state, providers, families, individuals and advocates need to be creative, flexible and look to new answers.  Paramount to all is keeping the focus and commitment on the individual.  My travels and conversations around the state give me renewed confidence that we can do just that.



As Pathways Campaign Moves Forward, Commitment to Help Those Waiting & In Services Continues

November 15th, 2010 by

Last week The Arc of Indiana kicked off the next phase of the Pathways Campaign, announcing five initiatives that are now the focus of this collaborative effort to redefine Indiana’s system of programs and services for people with developmental disabilities:

  • Use What You Need
  • Look to Work – from Paid to Volunteer
  • Realize Gifts
  • Support Resourcefulness
  • Shift the Power – What Works/What doesn’t Work

As the Pathways Campaign moves forward, we must also continue the important work of helping people access services that are currently available.  This includes assuring that people continue to move off waiting lists, assuring that the state provides Medicaid waivers to people facing an emergency or crisis and to young adults who have “aged out” of children’s residential services, and helping individuals and families receiving new Waiver allocations through the new Objective Based Allocation system.  

Despite these difficult economic times, a report from the Bureau of Development Disabilities Services shows that 102 new people were able to receive Medicaid waiver services in October.  

BDDS October Medicaid Waiver Report
New People Served  

  5 –  Autism Waiver Waiting List
14 –  DD Waiver Waiting List
12 –  Loss of Primary Caregiver
  8 –  Caregiver Aged 80 or Older
16 -  SSW / Special Education Current Graduates
31 -  SSW / Special Education Graduates on Waiting List
16 -  SSW / Waiting List
102  New people served  

With waiting lists now reaching over 20,000 people, the wait for too many families remains too long. While we are working for systems change through the Pathways Campaign, we remain committed to advocating for and working with the state to move as many people as possible off waiting lists each month, and to providing Medicaid waivers to those facing emergency, crisis or an end to school aged residential programs.  We also remain committed to helping individuals and families through the new Objective Based Allocation system.   

We are here to help.  Contact us at 800-382-9100 or thearc@arcind.org and we can direct you to a family advocate in your area through The Arc Network.   

We also need your help.  If you have not done so already, join us in the Pathways Campaign. You can keep up-to-date by signing up to receive our E-Newsletters, joining us on Facebook, and attending one of the regional forums we are hosting on the campaign that will begin in February.  

You can help us and others learn what is working for you or what is working in your community to support people with developmental disabilities in new or innovative ways – despite these difficult economic times – by sharing a story, photo, or video on the Innovation section of our Pathways web site; and you can learn from each other through the Message Boards on the Pathways web site.   

These are indeed challenging times, but also exciting times.  Working together, I am convinced we can and will achieve positive change.



« Older Entries
Newer Entries »