I would like to support the "Idea" submitted by Ms. Beauregard regarding the elimination of the Medicaid Home and Community Based waiver waiting list for people with disabilities.  Nationally, there are over 250,000 people on waiting lists that typically require 3 or 4 years of waiting for critical and vital services and supports.  Too often families reach crisis situations that are generally led to more expensive consequences before they actually receive services.  Also, people are forced to request more costly institutional services as they are an entitlement under the Medicaid program. 

Please end the institutional bias in the Medicaid program and help states with revenues necessary to address the need of this vulnerable population.

I also support Ms. Beauregard's idea about eliminating the Medicaid Home and Community Based waiver waiting list for people with developmental disabilities.  There is no place in our country for institutions.  Every citizen deserves to live, work, play and learn in his/her own community with the necessary supports and services.
Family members are also tied to the state in which a loved one receives services because there is no portability.  This especially effects those in our military.  This must be changed.
As a parent, I cannot die because there is no guarantee of sustainable supports and services for my son.  In lean times, the first budgets that get reduced are those which serve individuals with disabilities.  We must NEVER balance a budget on the backs of individuals with disabilities.
Ellen Garber Bronfeld

I also support this, as it is something I will be facing in a few years with our son Sam.  I think every child born into this country, even if born with disabilities, should have the right to every opportunity!  It shouldn't be up to the parents, when the child has reached adulthood, to provide full income, therapy, etc.  I hope something can be done so that my son, even with his challenges can contribute, even if only a little to society.

We need to end the waiting lists for adults and children with intellectual disabilities who typically wait for many long years before they get the services they need. This is surprising and offensive to most Americans who believe incorrectly that people with disabilities receive the services they need critically.

Some states have legislation that limits waiting to no more than six months. Why can't we have similar federal legislation that would prevent people from waiting for more than the time necessary for providers to set up the needed services ?

We need to end the waiting lists and fully fund the Medicaid waiver for everyone with developmental disabilities.  I have a 6 year old son with Autism and need the re-assurance that he will be able to have services as long as he needs them.  He has been fortunate to receive services for the past few years, and while that has made a tremendous difference for him, he will need many more years to come.  Please make this a priority for my son, and all others affected by similar problems.  Thank you.

As a mental health therapist serving people with developmental disabilities, I see “first hand” the suffering inadequate services to this population create. I have clients who suffer major depression because they are perpetually unemployed. I talk with parents who are exhausted from needing to continue to heavily support their children even as their children are in their twenties and thirties and older. Their sons and daughters are frustrated because, although they want to individuate and live independently from their parents, they are not able to without support from government funding.  The waiting list needs to end. Employment for this population needs to be supported.

I fully support the idea of

1.  Fully funding the medicaid waivers for individuals with developmental and intellectual disabilities.

2.  Insuring portability of services from state to state so that individuals can move from state to state without having to start the years-long wait list once again.For more information, please see the National Organization to End the Wait List athttp://www.noewait.net

I strongly support full funding for Medicaid Waivers and the fullest possible participation in life for all individuals who have developmental disabilities.  Furthermore, portability is vital.  It's unacceptable for parents and those with these conditions to have to navigate a myriad of disparate rules and regulations--that vary by county!

This important policy change will not only change the lives of those who need our support, it will also encourage these individuals to participate in and contribute to society at the highest possible level.  This change will also end  community-to-community discrimination against some of the most vulnerable individuals in our society.

Oh Please Yes! on the proposal re: Developmental Disbility services.

Persons with developmental disabilities can be contributing members of society, able to work and to give back to their communities in numerous ways.  They cannot, however, reach their potential unless they have the adult services that allow them to become fully or partially self-supporting, through education, vocational training and support, and appropriate housing.  The alternative is to leave this important segment of the population vegetating on SSI and welfare payments.Make certain the the Medicaid waivers are fully funded and available to all adults with developmental disabilities.

I fully support this idea.  I am a pediatrician who takes care of patients with developmental disabilities, and they sit on waiting lists for years.  This leads to them accessing more expensive health care in urgent and emergent situations, when treatments and therapies are more expensive and less likely to work than if they had received supporting care all along.  This is very important for our adults with developmental disabilities!!

It is estimated out of the 332,000 Americans waiting for HCB services, 224,000 of them are developmentally disabled.  Shame on us for not acting sooner to end this crisis.  I ABSOLUTELY support this prioritization.

These are our most vulnerable citizens -- adults with disabilities who have no safety net.  As their parents age, they cannot be cared for properly.  What happens when an elderly parent dies?  Does the adult with disabilities then become the responsibility of the government, at a much higher price?  Why not create jobs and opportunities for service-minded folks who would love to work with adults with disabilities, and give the adults additional meaning to their daily lives?  Please...let's keep the conversation going so we can create solutions where everyone wins!

This is exactly the kind of change needed.  The only thing that ever came out of Sarah Palin that made me give a momentary pause was her pledge to help special needs families.  This change would help the special needs person, and it is very important to end the waiting lists.

We need to end this waiting period/list for Medicaid Waivers for the Developmentally disabled.  My 5 1/2 yr old son is on a waiting list for 3 years now and we have a neighbor with a 7 yr old that is on the same waiting list for 5 yrs.  This has got to stop and we need to take care of our disabled children/adults.  We are running out of money to pay for his therapy needs and equipment and have no one to care for him after school, until we get home from work.  We have been waiting for this waiver to help us with his rising medical needs.  Help stop this crisis NOW. 

I was a teacher for over 30 years and the saddest thing I saw was how getting help to those who need help was always postponed.  I can not tell you how often I heard that a child was not quite low enough to get help.  The longer we wait to help people with a disability, the harder it is going to be to make a difference in their life and the lives of those in their family who are trying to help them.  This means they will less likely reach their potential and the cost of this will be much greater then helping them earlier in their lives. 

This is all great,  but it is also the topic of what I spent almost 2 hours in an interview on today - why parents can't come together with their plans and unite as a solid caucus.  I hope that this idea is at some time thought of by the new Administration.  I feel strongly that if parents of disabled children would band together as one and unite we would be effective.. the world of disabilities is so divided that it seems getting support for anything takes a bit of work.. If you would like to turn this into proposed legislaition contact me .. Peace4Kids@Yahoo.com.
Michael E. Robinson, Sr.

I fully support this idea!

I whole-heartedly support funding the waiver programs and allowing portability of said services.

Much has been written on this topic so I will not elaborate except, they need help and need it now.

The Waiting lists must end ! ! It's only fair and right ! !

Our son is 18 now and we are very concerned about his future as an adult.  My husband is 63 and I am 58 and we are not always going to be around to make sure he has a quality of life.  Justin needs constant supervision even on a job site as he functions at about a 6 year old level.  He is too social and there is the stranger danger issue also.  The waiting list is too long.  There are people on it for years and years that can barely function at all even to feed and dress themselves.  Please help us end this waiting list and help us help our " forever kids" to contribute what they have to offer and live a quality life. We have tried to band together as a group, Michael.  We worked very hard on Amendment 51 here in Colorado. Because of the distressed economy no extra money could be found from the taxpayers here but over 800,000 people voted for the amendment.  We spent many hours and even some of our own money working for this but even though it did not pass, this time, we raised awareness and we have not given up and won't as long as we can put one foot in front of the other!

This proposal to enhance funding for Medicaid Waivers is a no brainer. Waiting lists exist in every state and the fight that I fought to win funding for Carly was unlike anything that you could imagine. To have finally "beat the System" at their own game took nearly two years and involvement of everyone I could badger at the State level. No family should have to go through this battle, and fully funding the system will solve the problem once and for all.

As a provider for services to adults with developmental disabilities, I am very aware of the need for services.  Currently over 17,000 people wait for services in Florida alone and those that are funded have had their services severely cut due to the implementation of the "Tier" system and re-basing of cost plan   It is definitely time for change!

It is time to end the line.  Please adequately fund the d/d waivers and allow people living with a disability access to the medically necessary services they desperately need.   

I support this idea wholeheartedly.

I support Ms. Beauregard's idea regarding the funding for special need services. I am an adoptive Mom to 4 Special Needs children, all of whom are grown now. Services are somewhat in place now, my sons go to a training center, my one daughter is in a Group Home due to her severe emotional problems and my other daughter is in a special home for children with severe disabilities. It took 18 months of waiting for the youngest to be placed in that home, and yes it is a short time to wait in comparison to others still waiting. During this time with my daughter waiting for the services I was pretty much unemployed, staying home to care for her needs. Lifting her gave me a triple hernia. When we looked for the services, she needed them 'yesterday.' My other daughter went from RTF to RTF until they finally put her in a Group Home. She is thriving in that setting. My sons now have their workshop, however it took about 6 months to get them placed in that workshop after they graduated from school, still not a BIG amount of waitng time, however, when my employer was looking to downsize, she asked me what the plans were with the boys. At the time nothing had been set so I told her we might get services in the fall, but nothing was 'set in stone.' About a month later I lost my job, supposedly because of low enrollment at the day care. Another worker regained her job after my dismissal, she was 'family.' I have been out of work since, now 16 months to the day. IF the services were readily available two weeks after graduation, I might not have lost my job. I am sure the employer took into account the fact that nothing was set regarding my boys when she let me go. Nepotism also had a factor in my losing the job. Going into debt for college now so I might be able to find a better job where I will be judged on WHAT I know rather than WHO I know! Yes, I am STILL angry!

I strongly support the idea of fully supporting the waivers. After years of struggle by parents and providers of services which usually ended up in a lawsuit that MANDATED the state entity to fund the waitlist, we have regressed back to 5, 6 year (or longer) wait lists. It is outragious that our law makers still use the backs of people who can't make large campaign donations and have small voting capacities to balance the budget!!!

I work with people with DD and they depend on recreation and leisure programs that we offer to provide them with a better quality of life.  They need funding for these programs along with many other areas. 

I support full funding and portability for services for individuals with developmental disabilities. The Medicaid Waivers vary from state to state, in scope of services and in negotiated match requirements. Every state is in need of financial help to a degree that dwarfs the situation with the financial institutions and auto makers. With hundreds of thousands of individuals on wait-lists, an infusion of federal support in the form of a restructuring of the match requirements could address a multitude of problems, including resolving the wait lists, reducing the general revenue requirements of the state to access federal funds (thus freeing funds for other purposes), and creating an incentive for state legislators to meet their responsibilities to this most vulnerable and marginalized population.











 

This is a complicated issue. It does seem that federal legislation is necessary to end the wait list, however, it takes federal funds. What about baby boomers retirement funds? Health care for the elderly? Veterans? TBI? Mental health issues? Where is the money coming from? Medicaid appears to be tapped out as it currently stands. Yes, I will vote for federal medicaid legislation to end the wait lists, however, the system appears to be in jeopardy as far as I am concerned. I would really appreciate having a solution that seemed to have more long term legs. 

As a Crisis Intervention Counselor for people living with Prader-Willi syndrome (www.pwsausa.org) every day I work with people who are either waiting for or being denied essential services because medicaid waiver programs are not fully funded.  This creates terrible suffering for people and families living with Prader-Willi syndrome and other people with disabilities.  It means that some of our most vulnerable citizens are not given the opportunity to live and develop to their fullest potential.  I strongly urge the Obama administration to remedy this situation by advocating for fully funded medicaid waiver programs.  It is time to change our national priorites so that people with developmental disabilities are no longer an after thought in the public policy debate on health care and medicaid.  I also strongly encourage the concept of portability for medicaid waiver services.  People with disabilities should not have to start all over again in the system simply because they move from one state to another. 

As the Executive Director of The Arc of Delaware, I too support this initiative. We should assure services that improve the quality of life for individuals, families and whole communities. The Medicaid waivers can give freedom, independence and promote job opportunities and housing options for people with disabilities. Judy Govatos

I support the full funding of medicaid waivers for the developmentally disabled.  Perfectly stated above, "The Medicaid Waivers vary from state to state, in scope of services and in negotiated match requirements. Every state is in need of financial help to a degree that dwarfs the situation with the financial institutions and auto makers. With hundreds of thousands of individuals on wait-lists, an infusion of federal support in the form of a restructuring of the match requirements could address a multitude of problems, including resolving the wait lists, reducing the general revenue requirements of the state to access federal funds (thus freeing funds for other purposes), and creating an incentive for state legislators to meet their responsibilities to this most vulnerable and marginalized population." S. Kannel

Laurie Emanuele - Mom, Advocate

Congress could add $5 to $10 billion to the economic stimulus for an increased federal match (FMAP) for new Medicaid home and community based services to help get people off the waiting list.  Estimates from the University of Minnesota indicate that that a $5 billion would create 122,00 new direct support professional jobs.  This would help stimulate the economy while addressing needs of individuals with disabilities and their families.  Nationally, there are conservatively over 280,000 individuals on waiting lists -the largest percentage of which are individuals with developmental disabilities.  Yes we can!     

Fully funding medicaid waivers for the developmentally disabled is more than a "health" issue. The main goal for me behind this "Idea for Change" is to help bring change to America that will improve the quality of life for my five year old daughter, Abigail, who has Down syndrome. The wait list that currently exists for individuals with disabilities and their families has an impact on so many different levels. There is so much technology and researched based interventions that exist now to help young children with a diagnosis receive the interventions needed to reach goals and become active, productive citizens into adulthood. It seems a shame to let all this best-practiced research, advances in technology for healthcare and intervention be unused by some individuals with disabilities because of a wait list. One of the reasons I voted for Obama, was to see change in America that involves offering my daughter the best affordable healthcare and education available to ensure she has a stable, healthy and productive life as an adult. I believe the "Idea of Change" to eliminate this wait list is a huge step in the right direction in making these goals a reality for many Americans.

Having just moved from one state where we were recieving services after a 5 year wait, we are back on a waiting list in Colorado.  My son is capable and has many gifts to offer, but needs some assistance to be a fully productive citizen.  Instead, he is sitting around our new house bored because he is on a waiting list.  Let us make changes that really do show as Americans we care for ALL of our citizens.

This Idea is a very good one and I must retract part of what I stated in my previous comment.  We ARE banding together when we inform each other of issues like this ... and none of can take on ALL of what needs to be done in the REFORM Process.   I commend this Idea and give it my full support.  Again, if you would like to put this into a proposal that is backed by the actual proposed Legislation ( we can only give a 'thought abouit financial impact on the nation as that would be determined through the House, but we can give them the balance of the proposal in a way that it can be signed for endorsement).
Thank you for your comittment to our children and adults with Disabilities.
Michael E. Robinson, Sr.

My 5-year old grandson is severely affected by cerebral palsy.  For the past two years, he has been covered under the EDCD Waiver (for elderly and disabled) in the state of Virginia which pays for the cost of his aide.  He qualifies for the MR (Mental Retardation) Waiver which provides more services, but the waiting list is years long.  He really is entitled to more benefits than he is getting.

He lives in the state of Virginia, and recently went to Kennedy Krieger in Baltimore, Maryland for a communication assistive technology evaluation.  Medicaid paid for none of this because it was in a different state.  He goes back to Kennedy Krieger in June for a cognitive evaluation.  Again, this will not be covered by Medicaid.

This summer, I was taking my grandson to physical therapy 30 miles each way, twice a week.  I was unable to take him for 3 weeks because of prior plans.  I arranged for Medicaid transportation to take him and his aide to his therapy.  The night before I left on my trip, Medicaid called to tell me they could not take him - because the physical therapist did not accept Medicaid!!!  They would provide transportation only if the place they were taking him accepted Medicaid.  I called numerous agencies and private charities.  None of them would take him.  Our only choice was a private company that would transport him for $150 each trip.  We were able to find a family friend to take him once.  My grandson missed all of the other therapy sessions.

We have 50 states with 50 differing policy guidelines on
waiting lists. This creates a fragmented and confusing
situation for parents and individuals with developmental disabilities.
Keep hope alive for the future that we can change the paradigm to have fair and equitable policies throughout the entire U.S.

To add another comment (these don't end up making another vote as you can only vote once on a subject Idea - as many may know but some do not).........
I not only fully support this by vote but I have done what many parents did regarding The Autism Reform Act of 2009 Idea.. I believe very STRONGLY that this idea you have should prompt Obama to force the feds to do what is already Law.  Many of the things I have suggested in my 'Idea' / Proposed Legislation are already Law.. just not funded..   So,  As many have done for me I already have done for you.  It's simple to change your signature page and it can be changed back..so why not put this site to vote for Meicaid  REFORM,  on your sig list ?  I did .
Thank you for promoting something that is a necessity for so many.
Michael E. Robinson, Sr.  The Office of Advocacy for Autistic Children

Persons with disabilities deserve the same opportunities as we all do, although they need more support than most.  Fully funding the medicaid waiver will help give them these opportunities.  My daughter has been on the waiting list in PA for over 9 years for housing and has never been informed of an opening.

As a person with a disability and a parent of child on a waiver.This change needs to come and people need to be served in their homes in the community not locked away in nursing homes/institutions.My late husband was institutionalized 25 years for having Brittle bone disease.His IQ at 2 was 160 but wasn't allowed to start school until he was 8.It's so much cheaper to be in the community .It cost 150,000 per year while He was locked away.Do the math that's lots of money.He was healthier and had less fractures once He got in his own home with an attendant.

I'm getting older and I do worry about Nigel and his care.I want him in the community being independant as possible.He has grown up in the Independent living movement and attending ADAPT actions/protests  since He was 3.

Please support unlocking the waiting lists and FREE OUR PEOPLE!!!!!

Renee GA

"Health care is a right."

I fully support this proposal. I have a 20 year old son with Autism. We need to ensure that my son and alli ndividuals with developmental disabilites have acess to critical services.

I have a 7 yr old son with Aspergers. We had full serivices in Idaho which helped him to improve socially, physically, and mentally. Since our move here to Colorado our costs have increased dramatically and we find out although he would be approved for services he can't get them. This not only puts a financial strain on our family, but it does not allow him the services he needs to learn how to cope in his environment or excel like he would do if he recieved these vital services. His behaviors have also put a strain on our family. So please vote for this important waiver to help families who need this so desperatly!

I have a 7 yr old son with Aspergers. We had full serivices in Idaho which helped him to improve socially, physically, and mentally. Since our move here to Colorado our costs have increased dramatically and we find out although he would be approved for services he can't get them. This not only puts a financial strain on our family, but it does not allow him the services he needs to learn how to cope in his environment or excel like he would do if he recieved these vital services. His behaviors have also put a strain on our family. I have a daughter who is in need of counseling because of his violent behaviors and we as parents do not have the funds to get those services for her. So please vote for this important waiver to help families who need this so desperatly!

I have a 7 yr old son with Aspergers. We had full serivices in Idaho which helped him to improve socially, physically, and mentally. Since our move here to Colorado our costs have increased dramatically and we find out although he would be approved for services he can't get them. This not only puts a financial strain on our family, but it does not allow him the services he needs to learn how to cope in his environment or excel like he would do if he recieved these vital services. His behaviors have also put a strain on our family. I have a daughter who is in need of counseling because of his violent behaviors and we as parents do not have the funds to get those services for her. So please vote for this important waiver to help families who need this so desperatly!

Individuals with developmental and intellectual disabilities as well as members of their families have struggled and fought for years to obtain critical services.  When will the fight end?  The most vulnerable citizens of our great country should not linger on waiting lists; full funding and the elimination of the waiting list is the right thing to do!

Yes, we can!

I support fully funding the Medicaid Waivers because of two very important outcomes that would be accomplished if passed. First and foremost, individuals with disabilities would be provided opportunities to lead meaningful and productive lives along with their families. And secondly, it would be more financially responsible to provide waiver services at an average of $80,000 per person annually in comparison with the cost of institutionalization which averages $146,000 per person in larger states. We have all come in contact with people who have disabilities. Every family has someone with special needs. It’s time to get rid of those institutions and take care of our own children.