"DISABILITY MATTERS"

JANUARY 27, 2004 &

FEBRUARY 3, 2004

   2:00 EST

   HOST: JOYCE BENDER

 

 

 

GUEST: MARSHA BLANCO

 

Captioning provided By:

     Caption First, Inc.

     P.O. Box 1924

     Lombard, IL 60148

 

 

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Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings. 

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   >> Welcome to "disability Matters" with your host, Joyce Bender.  All comments, views and opinions expressed on this show are solely those of the host, guest and callers. 

   Now, the host of "Disability Matters," here is Joyce Bender. 

   >> JOYCE BENDER:  Welcome to this show.  I have to begin by thanking all of the listeners for all of the e-mail we have been receiving and all of the call-ins, which of course we hear from you throughout the world since this show is replayed in 12 hours.  But, you know, you've got to remember, keep united.  As I said the other day on the air:  Right here in the United States, there's 32 million Americans who, if they registered, could vote.  32 million Americans that are voting age.  Just think how much power that is if we would ever unite.

   And speaking of power, we are really lucky today, because we have a very powerful person as our guest, someone who impressed me, really, the first time I met them, and who I have -- any time I'm at an event about disability, including an event that was at Vice President Gore's home, it seems as if Marsha Blanco was there also.  And she is not only the President and CEO of Achieva, but she is truly a national advocate for Americans with Disabilities. 

   And Marsha, it is an honor to have you on the show. 

   >> MARSHA BLANCO:  Joyce, you are so kind and I wanted to begin by saying that we are so fortunate to have Joyce Bender based here in Pittsburgh, Pennsylvania.  Those of you who are regularly tuned in know that there is nobody like Joyce Bender.  If the rest of the world had one-half the energy, enthusiasm and skill of this woman, the world would be a very different place.  It would be a much better place. 

   >> JOYCE BENDER:  Well, that's very kind of you, very kind of you.  Marsha, I know someone like that, and it's you. 

   >> MARSHA BLANCO:  You're kind. 

   >> JOYCE BENDER:  I know someone like you.  And really, what I want to say to all of the listeners, and I really want you to follow what Marsha has to say, and really hear about Achieva, because you know she is one person that I've met -- so many people, unfortunately, sometimes get into vocational rehab, or they are service providers, and they get so caught up into their own thing and their own system that they forget about everyone else.  And she is one person who is not like that.  She truly is a leader, trying to make it happen for everyone. 

   And maybe, Marsha, you could start by telling our listeners a little bit about Achieva, what Achieva is.  I know that many people here in Pennsylvania listening know what ARC of Greater Pittsburgh is, but they may not know the name Achieva.

I have to tell you, on their website it says:  "Celebrate abilities:  Exceeding expectations."  I love that. 

   >> MARSHA BLANCO:  Thank you, Joyce.  We are Achieva, a family of companies here in Pittsburgh that provides a multitude of supports for people with disabilities.  As Joyce just noted, for the first 50 years the organization was known as ARC Allegheny.  Many of you are familiar with the ARCs throughout the country, focusing their attention on advocacy and supports for people with cognitive disabilities.

   Over the last number of years we here in Pittsburgh through the ARC Allegheny began to support people of many differing types of disabilities.  And based on the fact that the ARC is, of course, known primarily for its work with cognitive disabilities, as well as the fact that we have been expanding geographically into other states as well as many, many of the counties in Pennsylvania, we felt that it was time to reorganize and to give ourselves a title that more broadly addressed the needs and concerns of the broader constituency of people with differing abilities throughout the country.

   In addition, we have been partnering with many other organizations, both nationally and statewide here in Pennsylvania, and we have other organizations that have been expressing an interest in joining the Achieva family of companies.  So by creating a new parent organization, named Achieva, that allowed us to really re-brand what the organization now 53 years of age is all about.

   Joyce just mentioned that our tag line is that of "Celebrating abilities:  And exceeding expectations" and all of us here at Achieva do, in fact, celebrate the abilities of individuals who carry a variety of labels and hopefully exceeding each and every expectation of both our customers and that we at Achieva hold ourselves to.  We hope to exceed the expectations of all of our constituents. 

   Here at Achieva, we do everything from very, very early work, upon actually sometimes prior to the birth of a child with disabilities or developmental delays and on through senior services.  Our work includes early intervention, very near and dear to my heart, Joyce, this is where I began my career working with very young children with disabilities.  This year we will provide early intervention support under IDEA, to some 2500 babies, from birth through 3 years of age.  And we do that throughout Central and Southwestern Pennsylvania.

   This particular program is just the joy of this entire organization.  It's based on our belief that if we can help families to get over that initial hump of oftentimes great confusion and very, very strong feelings in perhaps not having that baby that they expected to have, helping that family to understand that this child is going to bring great joy to their lives and to the entire life of their family, we of course provide everything from developmental therapy to physical therapy, occupational therapy, speech and hearing work, and we do this all in natural environments; either in the homes or, if the parent would prefer, a daycare center if that's where the infant is.  And it's just a total inclusive family where we are working with brothers and sisters and parents to help them to become the great developmental folks that they are going to become in working through their milestones in their children's lives.

   We go on to provide extensive respite services for children and adults.  We have individual advocates who work in both the educational system as well as with adults with cognitive and other disabilities.  As every one of your listeners understands, Joyce, we work in a very, very complicated system regarding benefits and supports that may be available to an individual.  And we have a team of advocates who are there free of charge to assist individuals and their family members for children, and being sure that folks are accessing the types of supports and services for which they would be eligible.

   We do recreational programming.  We do, as Joyce knows, job placement and vocational services for people on a daily basis.  We have residential supports, including personal assistants, to help individuals who are still living with the natural family at home as well as individuals who are living in apartments or homes.

   We have very specialized services, such as a program called Esprit, that works with mothers and fathers who have disabilities and who are raising children at home.  And we have a host of learning experience and support systems to help parents to be the excellent parents that they want to be.

   We have family and individual training services.  We have, of course, a self advocacy group for young people and adults with disabilities.  And we have senior services for individuals, including going into the typical senior center and providing specialized support for a person with disabilities who wants to go to a senior center upon retirement.

   And last, but certainly not least, we have a family trust, where participants without jeopardizing their government benefits may place private assets and may draw upon their assets in order to augment supports and services that might otherwise be funded by the government, so that people can lead a good life that is one that can help them to achieve personal outcomes. 

   >> JOYCE BENDER:  That is absolutely phenomenal how many services you're providing.  That's wonderful. 

   >> MARSHA BLANCO:  Well, it's an organization, Joyce, that has always had as part of its founding philosophy that of innovation.  Whenever Achieva sees a gap in supports and services, when customers come to us feeling that there is a gap or something that they need, we go out and try to find the necessary funding to put that together to fill that gap. 

   >> JOYCE BENDER:  So that our listeners know, and we want to repeat this again later in the show, how do people contact you if they want to make a donation to your organization? 

   >> MARSHA BLANCO:  Oh, thanks, Joyce.  We are easily contacted via e-mail.  And that is at:  achieva.info.  We are also available of course via telephone.  And the central office number is:  412-995-5000.  I can be accessed at extension 401.  That number is 412-995-5000.  And I myself can be reached at 401. 

   >> JOYCE BENDER:  Marsha, how many people are you working with?  How many people do you serve, would you say? 

   >> MARSHA BLANCO:  This year we anticipate that 6,200 people will choose to receive some type of support through Achieva. 

   >> JOYCE BENDER:  6,000.  That is unbelievable.  How many would you say percentagewise, if you just took a guess, would be children? 

   >> MARSHA BLANCO:  Something like a third of those individuals are young children.  One-third. 

   >> JOYCE BENDER:  As you were talking about earlier on the show, this is where you get involved with the early intervention.  How early? 

   >> MARSHA BLANCO:  Yes.  We actually provide counseling to a mom or dad who may learn through amniocentesis, for instance, that mom is carrying a child with Downs syndrome or with Spina Bifida.  So we do prenatal counseling.  But we pick the babies up through highly individualized planning with their parents at birth.  And the early intervention services go through three. 

   >> JOYCE BENDER:  Sorry.  What age does that go through? 

   >> MARSHA BLANCO:  And those very intensive therapies go through three years of age. 

   >> JOYCE BENDER:  Now, you have counselors that you send out or how do you do this? 

   >> MARSHA BLANCO:  This is all done through specialists, and I must tell you since early intervention became an included part of IDEA, this is of course part of our national work, to be sure that young, very young children with disabilities get a good, strong, healthy start in life.  And beautifully, Joyce, knowing that you are the advocate that you are, this is also for the entire disabilities community.  These are the next generation of leaders. 

   >> JOYCE BENDER:  Hold on with that thought.  We will be right back after the break with Marsha Blanco, President and CEO of Achieva.  We will be right back.

   >> You're listening to VoiceAmerica.Com, the world's leader in Internet talk radio.

   >> Welcome back to "Disability Matters" with Joyce Bender.  If you have a question or comment for Joyce or her guest, call toll free at 1-888-335-5204.  Now back to "Disability Matters," here is Joyce Bender. 

   >> JOYCE BENDER:  And we are back to the show with Marsha Blanco.  Of course, you can call in at 1-888-335-5204.  But in addition as all my listeners know, you can e-mail us while the show is on to disabilitymatters@benderconsult.com, during the show, after the show or prior to the show. 

   So with that, Marsha, we have a question for you from Sherry in Pennsylvania.  And the question is:  I've read your vision statement about Achieva envisioning the day when people with disabilities fully participate in their communities.  But in your opinion, what do we need to do to bring down this barrier?  What is the largest barrier that prohibits people from fully participating?  That's a big one, huh? 

   >> MARSHA BLANCO:  Joyce, I still see daily the amount of prejudice that is out there.  The amount of ignorance and misunderstanding of disabilities issues.  I happen to think that our greatest barrier to full and complete inclusion and the bounties that exist in all of our local communities is the misunderstanding of others.

   We here at Achieva spend a fair amount of money and a lot of attention on a daily basis to trying to educate the general public.  The day that I would live to see is when not only the physical barriers, because those are things that of course we can see and we can litigate and we can correct those things.  But it's the attitudinal barriers that I think are the greatest challenges for persons with disabilities and, in many ways, still act to prevent people from just fully living the life that they want to live in our communities. 

   >> JOYCE BENDER:  And I agree with you, Marsha.  As a matter of fact, when I was asked to do this show, I was allowed to choose or select the sound track.  And as my listeners know, the sound track is "New Attitude" by Patti La Belle. 

   >> MARSHA BLANCO:  Ha-ha.  Yes, ma'am. 

   >> JOYCE BENDER:  And I chose that.  To me that's what it is all about, that we need a new attitude in this country and of course throughout the world toward quality of life, equality employment for people with disabilities. 

   >> MARSHA BLANCO:  What we are battling are hundreds, actually thousands and thousands of years of total misunderstanding, so that I hope and I do believe in the next generation and the generation following that that we are going to be breaking down these bad attitudes.  I think that one of the most wonderful things that has occurred in just the last 25 years, and of course it was through a lawsuit before the Supreme Court of the United States, was to get special education in place.  And more and more so as young people are now being educated shoulder to shoulder with their peers who do not have disabilities, we are seeing a real difference in attitude.

   I think that that is going to translate as this next generation comes into the workplace and become supervisors and managers, that having gone to school with children, even children with very significant disabilities, that the doors are going to be much more open to understanding how to make an adaption here or an adaptation here or there, in order to allow every adult to fully participate in the community.

   We have only been at this for 50 some years, and on a bad day I reflect back to what it was like 50 and 60 years ago in these United States for a person with significant disabilities.  And that gives me great hope and just reenergizes me on a regular basis, to know how far we have come in 50 years and to think of where we will be at in another 50 years. 

   >> JOYCE BENDER:  Will you repeat to our listeners again when, in the United States, when special education was put first in place? 

   >> MARSHA BLANCO:  Oh, this was, regrettably, this was under 30 years ago and we here in Pennsylvania actually initiated the lawsuit through the ARC in Pennsylvania, put forth plaintiffs.  And it just astonishes me sometimes, and I expect that most of your listeners understand that all other children in these United States were granted a free public education in the latter 1880s.  It took nearly 100 years for one group of people to achieve that same right.  And those were children with significant disabilities.  Through the early '70s in this country, parents could take their child to a school to enroll for kindergarten and first grade, and they could be told, without impunity under the law, that the school district could not and would not educate that child.  So the beat goes on. 

   We still have a lot of work to do. 

   >> JOYCE BENDER:  I'm so proud that that happened here in Pennsylvania with your organization.  And may I say, though, that if we were right now watching jeopardy and this question was asked, I really doubt anyone would say 25 years ago.  Unfortunately, I really think most people would think well, I'm sure it's been like that for a long time.  But this just shows you, you know, how recent it is.  Just as I tell people, Justin Dart always used to say, you know, when people would say well, the ADA has been written, it has been passed, so why do we still have problems for people with disabilities gaining employment?  And his answer would be:  Well, the Ten Commandments were written a lot longer ago than that, and you see how long that took.  And, really, what he meant was --

   >> MARSHA BLANCO:  What an extraordinary comment, yes. 

   >> JOYCE BENDER:  It's only 10 years old.  Of course, it's a little longer than that now.  But it was only signed in 1990 and implemented in 1992, the Americans with Disabilities Act.  And it did open the doors for millions of Americans and people throughout the world that then modeled after that their own legislation.  But nonetheless, we do still have a long way to go.  And that's why I'm glad we have people like you and organizations like Achieva helping us do that.

   And by the way, how were we so lucky to get you involved with Achieva, Marsha? 

   >> MARSHA BLANCO:  Aren't you kind even to ask.  But I am one of many, many professionals that grew up with disabilities in my family.  And it was one of those things that I knew from a very early age that I was going to do with every amount of energy and professional training that I could get, that I wanted to help to make the world a better place for people with disabilities.  So many of us, of course, in this field ourselves have disabilities or have immediate or close family members.  And I think that that is part of what gives us some of that special energy that we have.  Don't you think, Joyce? 

   >> JOYCE BENDER:  Absolutely.  I know that in my case, as I tell people -- of course they know, my listeners, all know I have epilepsy and a hearing loss.  And, you know, I tell them.  Don't let it be that you have to have an accident or that it has to be a family member for you to realize that all people should be included for their ability.  But, unfortunately, just as you mentioned, many times I've noticed that even in employment that sometimes I'll meet someone and they are so passionate about employing people with disabilities and then I will find out a son, daughter, sister, brother, mother or father, a wife or husband has a disability.  And that's why I'm even more excited when I meet someone who wants to do this and they have no one in their family with a disability.  They just realize it's a good business decision to do that.

   >> MARSHA BLANCO:  We call them concerned citizens and civilians here.  Among our 80 some trustees, about 30 outstanding folks from our community choose to assist us with the governance of this organization.  And I, too, am always amazed when someone has not been affected by a disability him or herself or through an immediate family member.  And they just come to care about this issue as much as we do. 

   >> JOYCE BENDER:  Uh-huh.  Yes.  And we, we call them the temporarily able-bodied. 

   >> MARSHA BLANCO:  There we go!  I like that, Joyce.  I'll use that.  I'll attribute it to you. 

   >> JOYCE BENDER:  Yes.  Now, Marsha, we have a question here for you from Pennsylvania, another question.  And it is:  Marsha, you mentioned briefly IDEA.  Can you tell us where we stand on IDEA in this country? 

   >> MARSHA BLANCO:  We are -- I think that IDEA, what we know is that of course it has never been properly funded.  When we say IDEA for all of the listeners, that of course was originally the right to education for all handicapped children's act.  Now called the Individuals with Disabilities Education Act, or IDEA.  This is a law that has never been fully funded.  About four years ago we had tremendous movement in Congress.  That led all of we who work constantly to educate our Congress folks starting to see some movement toward more proper funding of special education.

   One of the difficulties is that special education gets bad mouthed at the local school district level because it has never been properly funded by the Federal Government.  And it is felt sometimes to be a drain on funding sources that would otherwise go to regular education.

   And I think that that causes a lot of resentment and unnecessary problems at local school district levels.  We still have quite a number, although diminishing in Pennsylvania, we still have a number of states that have a lot of separate schools for youngsters with disabilities.  Every evidence and data that we have tells us that children ought to be educated together, that having the total experience, the social experience of being in a regular school can be invaluably helpful to young children when they go out into the real world to get a job, find an apartment, get on with their adult lives.

   It's a law very much like the ADA.  When you read the words on paper, Joyce, you would say with a sigh:  Ah, we have tackled this, because the words are in the right places, the value base is solid.  Unfortunately, When it gets to implementation, we have not been a very -- we have not done a very good job in translating those wonderful words that are in the statute into real and great educational experiences for children. 

   >> JOYCE BENDER:  Hold on one minute with that thought.  We will break again and we will be right back with Marsha Blanco.

  

   >> You're listening to VoiceAmerica.Com.  The world's leader in Internet talk radio.

   >> Welcome back to "Disability Matters" with Joyce Bender.  If you have a question or comment for Joyce or her guest, call toll free at 1-888-335-5204.  Now back to "Disability Matters," here is Joyce Bender. 

   >> JOYCE BENDER:  And we are talking to Marsha Blanco, the President and CEO of Achieva, and truly a national leader in advocacy for the employment of People with Disabilities. 

   Marsha, we have a question for you here.  Jennifer, in Kansas says:  I work for a company that hires people to do light manufacturing and packaging work.  We pay employees well and offer good benefits.  I strongly believe that a person with mental retardation could do this job well, but I cannot convince my management to give them an opportunity.  What suggestions do you have for me to help him understand? 

   >> MARSHA BLANCO:  You know, it's a great question.  And, first of all, we know that we have the data that says that a person with cognitive disabilities can do all kinds of work, that we have data from employers throughout the country that tell us that some of the most consistent of their employees, consistency in getting to work, consistency in getting the job done, getting it done right and getting it done on time, are persons with disabilities and especially people with cognitive disabilities and mental retardation, where the unemployment rate of course as we well know for people with disabilities in general, but more specifically for people with cognitive disabilities, hovered around 90 percent.  So we have all of this wonderful talent with about 3 percent of the general population carrying that classification or label of cognitive disabilities or mental retardation, we have this wealth of talent and manpower out there.

 

   You know, I'm one who subscribes to something that I learned very, very early on from one of our greats, deceased, Mark Goldmark, training us to say:  Try another way, try another way.  I believe much of this is just education, putting forth the facts, even asking your employer to give it a shot, give them four to six weeks and see if this person can be trained to do the job to the level of proficiency that you want, and I can almost guarantee you that that will be done. 

   >> JOYCE BENDER:  May I add to that, the company that I own, Bender Consulting Services, is working on a national project called the Elizabeth Project, where we want to employ people with cognitive disabilities into competitive work in the IT area.  And we now have two companies who are interested in the group we are partnering with, is Achieva, to make this happen.  And I firmly believe that one of the biggest problems is ignorance.  Because, Marsha, I'm sure that you run into this every day, but have you noticed how, when you talk about people with cognitive disabilities, that many people who are not educated or informed in this area have a tendency to immediately put them in certain types of jobs only? 

   >> MARSHA BLANCO:  Thank you, Joyce.  And by the way, the Elizabeth project has us so excited back here in Pittsburgh, and I know that Bender and Associates is working on this nationally, it's one of the most exciting things going on out there in our field.

   Yes, and some of this goes back to a previous question about how IDEA is going.  From 14 years of age, a child who is in special education is entitled to transitional services to help to prepare that young person for real work in the real world for real pay.  Regrettably, I think that oftentimes our school districts are failing us.  They tend to try to pigeonhole young people with disabilities into only a few fields.  Yes, we have quite a number of people who bag at supermarkets, and yes we have individuals who might want to go into food service or janitorial services. 

   But people with cognitive disabilities are like all the rest of us.  They have a huge variety of talents and ways in which they would like to express themselves in the workplace.  Unfortunately, there are just a lot of misperceptions out there about the talents and skills that a person with cognitive disabilities can bring to any job.

   >> JOYCE BENDER:  Yes, and just so you know, this is across the board.  Because I know that I've sent people on interviews, and these are people, for example, from the deaf community, and the company wanted to know how did they get there?  They didn't think deaf people could drive a car. 

   >> MARSHA BLANCO:  Wow! 

   >> JOYCE BENDER:  So, you know, this is in so many areas.  But I have to say that unfortunately the unemployment rate is so extremely high in this area.  And that is why it's so important that we all really work together in this area to include all people with disabilities when we are looking at employment in different areas.

   And, by the way, I'll tell you because many of my listeners know The Honorable Tony Coelho, he has been on the show and he will be again.  He is involved with this Elizabeth project.  Our guest in a few weeks is Judith Heumann. 

   >> MARSHA BLANCO:  What a wonderful person.  I'm so delighted to be in the company of some of your guests, Joyce. 

   >> JOYCE BENDER:  Well, of course you would be, with all the great things you are doing.  And you know with that IDEA, I mean, do you think that we are going to have problems with it continuing on? 

   >> MARSHA BLANCO:  I don't think so.  I think that special education is now firmly entrenched.  When we understand the amount of prejudice that of course has existed and that we have only had some 25 years to begin the process of exploring instructional techniques to help every child to reach their full potential through education, I don't think that there is -- we have never felt any threat from Congress on retrenchment of IDEA.  We do and we are currently involved in reauthorization that, you know, there are efforts to chip away at some of the basics and fundamentals of IDEA.

   However, I've got to give tremendous credit to the disabilities community.  And forgive me, I need to mention the ARC of the United States showing just unbelievable leadership in all of our lobbying and education work on Capitol Hill in these very basic and important components in the lives of people with disabilities.

   The ARC had shown leadership not only on IDEA, but on so many of these very, very important legislative pieces that we need to have in place.  And we here at Achieva are pleased to have two ARC chapters that are members of the Achieva family.  And what a great, great job nationwide these 1,000 chapters of the ARC do in assuring that we not only maintain those benefits that have been put in place, but to continue to improve those benefits. 

   >> JOYCE BENDER:  And what do they have?  Do they have a similar organization in other parts of the world, such as Canada? 

   >> MARSHA BLANCO:  Yes.  And, in fact, we have sister organizations in Canada, in New Zealand, throughout the world, that regularly communicate not only on a research basis, but assist each other in developing the legislation and public policy that we know will some day allow all people with disabilities to fully participate in their local communities. 

   >> JOYCE BENDER:  I have another question for you here, Marsha.  And I -- as I always tell our listeners, I cannot read every question that is sent to us, but we have a question here, another question from Pennsylvania. 

   Some school systems are not as good as others about accommodating people with cognitive disabilities.  What advice do you have for parents who are running into these roadblocks? 

   >> MARSHA BLANCO:  Well, number one, what we try to do in local school districts is to have groups, family groups, for the parents of children with disabilities in a given school district.  The person who is asking this question is absolutely correct.  It's a quilt, and you have some districts that have simply embraced inclusion and are doing an unbelievable job with every child in that district.  You have other districts that, frankly, don't do such a great job. 

   Here at Achieva we do have a team of educational advocates.  Again, these services are free of charge to any family, and if a family is having either a problem in developing or having implemented the proper individual education plan for their child, they need only call.  Again, that is 412-995-5000.  We can provide individual assistance, including going with the parents to their EIP.  And we will take things directly, if necessary, through due process for families.

   It is interesting, and this is a phenomenon throughout the country, the implementation of IDEA is not at all level, a level playing field, and when folks are moving here to Pittsburgh we are oftentimes the organization that will get a call if the family has a child with disabilities.  They will often determine where they are going to live based upon the supports and services that they can get from a local school district.  And we have, again, several districts that are just excellent and it is also the case that those districts tend to have larger numbers of children with disabilities in the district, because we refer to those districts that do things really well. 

   >> JOYCE BENDER:  Wow, that is excellent.  Well, Marsha, when you were talking earlier you mentioned just briefly about, you know, people going to special schools versus being included, mainstreamed with everyone.  But in addition to that, I have a question for you.  I mean, we have made so much progress, but where are we in the United States now in reference to institutions?  You know, how -- what percentage would you say still exists of institutions or institutionalized living for people with cognitive disabilities? 

   >> MARSHA BLANCO:  The simple answer would be too many!  The progress in the area of deinstitutionalization has been actually quite phenomenal.  Here in Pennsylvania, just 25 years ago, we had well over 12,000 people living in publicly run state centers.  That number is down just below 3,000 today.  And this is fairly common throughout the United States.

   We here in Pennsylvania, and I believe most of the states with larger populations, look with some envy upon some of our sister states.  We now have 8 states that are literally institution free. 

   >> JOYCE BENDER:  Hold on one minute.  Keep that thought.  We will be right back with Marsha Blanco.

    

   >> You're listening to VoiceAmerica.com.  The world's leader in Internet talk radio. 

   >> Welcome back to "Disability Matters," with Joyce Bender.  If you have a question or comment for Joyce or her guest, call 1-888-335-5204.  Now back to "Disability Matters," here is Joyce Bender. 

   >> JOYCE BENDER:  Welcome back to the show.  We are here with Marsha Blanco, President and CEO of Achieva, and someone who I look up to very highly.  Marsha, before we went to break, once again going back to the institutions where people with cognitive disabilities are still residing, approximately how many did you say there were in Pennsylvania? 

   >> MARSHA BLANCO:  At one time we had over 12,000 individuals in our publicly run institutions and we are down to about 3,000 people today.  As I was saying, Joyce, the great news is these numbers continue to go down nationwide.  And we now have a number of states, a growing number of states, that are institution free zones. 

   >> JOYCE BENDER:  Wow! 

   >> MARSHA BLANCO:  The state legislature has completely committed itself to community supports and services for all people with cognitive disabilities. 

   Joyce, I was hoping that we could touch on one other thing, and that is one of the more exciting and newer things that we are doing here at Achieva.

   The company is called The Family Trust. 

   >> JOYCE BENDER:  Yes.  Please talk about that. 

   >> MARSHA BLANCO:  Thank you.  This is something that we designed about five years ago in line with action that was taken by the Congress of the United States in the mid '90s.  One of the greatest difficulties that we think exists for people with disabilities is that you've got to be low income or live a life of poverty in order to be eligible for a variety of government supports and services.  Thank the Lord that is no longer the case.  Congress in the mid '90s enacted legislation that encouraged not for profits to create pooled trusts.  Through a pooled trust, an individual with disabilities may, through inheritance, through excess assets that they may have in their name, they may place funds into an entity such as The Family Trust, which was the first comprehensive such entity of its kind in the country.  And government now guarantees that it will not count against the individual's eligibility for government supports and services any funds that they have placed into a properly constructed pooled trust.

   What does this mean?  It means that unlike in previous years when families would purposefully disinherit, for instance, a son or daughter, that an individual could not earn above a given amount of income or have assets in excess of about $2,000 in their name, those days are now gone.  And we are trying to get the word out throughout the country that pooled trusts are now an option.  An individual family member, including parents and grandparents, can place funds, private funds, into again a properly constructed pooled trust for the individual's use in whatever way they would want to use those assets at any time in the future.  And funds placed, private funds placed in a properly constructed family trust will not be an offset for the individual for any government supports and services for which they would be eligible.

   >> JOYCE BENDER:  And just so you understand when you're listening to the show, this means that someone with a severe disability, a cognitive disability, they would be in a situation where, as Marsha mentioned, they would have to be disinherited; they would not be able to receive this money from their family.  Or if they did, there would no longer be any services provided to them.  What a terrible thing. 

   >> MARSHA BLANCO:  That is correct. 

   >> JOYCE BENDER:  What a terrible thing.  And The Family Trust, Marsha, what is it worth today? 

   >> MARSHA BLANCO:  We have over 700 participants from four states.  And the assets that people have placed in this trust for use by their family member now totals over $12 million. 

   >> JOYCE BENDER:  So, that's wonderful. 

   >> MARSHA BLANCO:  And of course we have funding coming in and out on a regular basis.  We are building homes for individuals.  Folks are taking vacations to visit relatives across the country that they haven't seen in many years.  It allows people to lead the life that they want to lead without jeopardizing any government benefits. 

   >> JOYCE BENDER:  And if you live in another state then and you wanted to be involved with this, what do you do? 

   >> MARSHA BLANCO:  Yes.  You can simply contact us, once again, through www.achieva.info.  Or call the toll free number, which is 888-272-7229.  The individual who is the President of our local family trust is an attorney, Kathleen Hendricksen, and we pledge that she or her team will get back to you immediately to give you the ins and outs of participation in The Family Trust. 

   >> JOYCE BENDER:  And for Marsha to continue doing this great work, which to me is liberating people with disabilities and providing them quality of life and really hitting your vision statement, "Celebrate Abilities, and Exceeding Expectations," they are doing that.  But you know for her to do that, if you are a corporation listening or a business person, since many of my listeners are in the business community, you know, this is a good organization to make a contribution to.  Because without funds, it's difficult to keep moving forward. 

   If you are a parent of a child with a cognitive disability, you know, this is the type of organization that you need that can help you so much.  So I would encourage all of you, remember, everyone needs help.  Make a contribution.  And again, Marsha, repeat where someone would make a contribution to? 

   >> MARSHA BLANCO:  They could call the toll free number:  888-272-7229.  In Pennsylvania, the number is 412-995-5000.  And what we pledge here at Achieva is to be out on the edge of things.  I know that many of your listeners, Joyce, understand that it takes us years and years sometimes to convince government to do the right thing and to fund something that is tried and true. 

   I think the most exciting things in our field right now are those things that are totally innovative.  And they are coming from self advocates and family members.  These are folks who have that vision of what the next generation of supports ought to look like. 

   And we pride ourselves here at Achieva of being associated, also, with the Council on Quality and Leadership.  That is, of course, the international accrediting body that now has these beautiful standards that are outcome based.  That's where the whole field is going to head, so that individuals in a highly self-determined way can decide how they want to live their lives, what they want to do to bring their talents and abilities to the table, and we exist to simply help people find the way to do that. 

   >> JOYCE BENDER:  Well, Marsha, I want to thank you for taking your time to be the guest on our show.  You know, if you're listening to this show, it will be archived at www.benderconsult.com.  Marsha, it was a pleasure having you.  And every show, Marsha, every show, we end with a quote.  And today the quote is from Former Governor Thornburgh, who said:  "The ADA is in place, but Americans must take the next step.  Open their hearts and minds and change their attitudes towards persons with disabilities." This is Joyce Bender and Marsha Blanco.  See you next week.  Bye-bye. 

   >> Voice America would like to thank you for tuning in.  Please join us next Tuesday at 2 p.m. EST, for another installment on "Disability Matters" right here on the Internet talk radio leader, VoiceAmerica.Com. 

 

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This text is being provided in a rough draft format.  Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings. 

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