Planning for the Future: Life Care Planning is an Important Tool for Families with Special Needs
By: Kelley Stokesbary, CLCP, MSOTR/L
Stokesbary Life Care Planning
E-mail: stokesbarylifecareplanning@yahoo.com
Phone: (859) 396-5612
As the parent of a child with Down Syndrome, you understandably worry not only about meeting your child’s needs currently, but also in the event that something should happen to you rendering you incapable of providing care. Knowing exactly what those needs are currently, as well as in the future, can be difficult for a parent to determine. Are you doing everything you can to promote your child’s independence? What options are available for additional therapy services? Should I be consulting with specialists, and if so, whom? Where will my child go after high school? Will she be able to live on her own? Who will care for him after I am no longer able? Frequently parents simply do not have the time or the resources available to determine and plan for such needs in the face of daily care-giving. Fortunately, there are specially trained individuals known as Life Care Planners who are capable of helping you navigate through these difficult questions.
A Life Care Plan is a “dynamic document that provides an organized concise plan for current and future needs with associated costs” for individuals who have Special Needs (Source: International Academy of Life Care Planners). Basically, a Life Care Plan is a “roadmap” that promotes function, independence, and quality of life for an individual with Special Needs by outlining the medical needs and the financial burden associated with those needs. A complete Life Care Plan covers 18 categories ranging from physician and specialty appointments to therapy services to transportation and housing needs. It is very detailed and provides a clear look at what needs to be done, when it needs to be done, and why it needs to be done to promote the individual’s independence and quality of life. While the full Life Care Plan is the optimal choice, if desired, the Life Care Plan can be abbreviated to cover only those areas particularly concerning the parent – frequently the areas of education/vocation and home care vs. facility care. In a recent MetLife study, over 50% of parents of adult children with disabilities voiced concerns about their child’s living situation and finances after the parent’s death. Despite that, less than 50% of those parents had created a will, estate plan, or Special Needs Trust, and less than 10% had created a Life Care Plan. A Life Care Plan, when combined with a will, estate plan, and Special Needs Trust affords both the parents and the child with Special Needs peace of mind.
Life Care Planning is still a growing profession with only a handful of Certified Life Care Planners in the state of Indiana. In choosing a Life Care Planner, look for a health care professional who has experience with the Special Needs population. Consideration should also be given to the Life Care Planners professional background – are they still practicing in their prior healthcare profession or are they solely completing Life Care Plans? For example, hiring a Life Care Planner who is an Occupational Therapist and is still actively practicing Occupational Therapy ensures that the Planner is current with new theories and technologies. Choosing a Certified Life Care Planners versus a Life Care Planner who is not certified ensures that the Planner has met the national credentials and is held to a Code of Ethics and Standards of Conduct. Lastly, consider the cost – is the Life Care Planner charging an hourly rate or a flat fee? Both methods are commonly utilized, but if an hourly rate is being charged, ask for an estimate and a maximum fee amount. The cost for a Life Care Plan for a Special Needs individual typically is equivalent of having a will created.
Being proactive about developing a Life Care Plan certainly puts some work on your shoulders initially. However, not having one could mean more work, more stress, more problems to resolve, and more decisions to make under pressure – being reactive as situations arise again and again throughout life. So, take a deep breath, relax, and let a Life Care Planner help. For a complete listing of Certified Life Care Planners in Indiana, visit http://www.ichcc.org/clcp/directory.asp?w=1&l=17.
Thursday, January 19, 2012
Wednesday, January 18, 2012
Life Care Goals
How do I Develop Life Care Goals?
by guest blogger, Jim Cherco
Having a child with special needs presents many large and difficult challenges. Often families that have a child or children with special needs struggle with doubts and stresses about how best to raise and provide for their family now and in the future. If you are the parent of a child with special needs, the specialized care of your child is surely a very significant concern for you and your family. The job of devising a strategy for support that is ongoing and provides the long-term funding that is needed may be daunting enough that planning never gets started, much less, put in place. Have you considered who will care for your child in the event of your untimely death? Do you have a strategy in place for financing the care of your child as you (and your child) age? Perhaps, someone in your family has agreed to take over the care of your child when you are no longer able to do so. This can present its own challenges and stresses.
When I moved here to the Indianapolis area from Illinois back in 1989 I learned about the famous breaded tenderloin that is “as big as your head”. I asked a friend how on earth one goes about eating such a huge sandwich and he replied, “one bite at a time Jimmy”. I think you should approach your strategy for developing a life care goals are for your special needs child in much the same way. Take on one thing at a time and then move forward until your goals are complete, then review them annually and adjust it for the changes that life brings your way. Having a strategy in place can help to provide the quality of life you want for the child you love when you are no longer able to care for him or her. It will also give you the confidence you need, as a parent of a special needs child. The stress level you experience raising your child has been likened to that of a combat soldier, and can shorten your lifespan by up to 9 to 12 years. Having a strategy in place now to care for the future needs of your child can reduce some of your stress.
Fortunately there are programs that the government offers in addition to Special Needs Trusts (SNT) and Life Insurance that can provide options and funding for the ongoing care of a loved one with special needs. A combination of permanent whole life insurance and term insurance along with an SNT, is a great way to help provide financial care for your loved ones after you’re gone. While making sure that the funding is in place for a special needs child is important, permanent life insurance can provide much needed cash in an emergency.
Making it a priority to keep an updated will at all times that coordinates with an SNT is key to making your wishes known. Additionally, a letter denoting your detailed wishes can prove to be an invaluable asset. It can be a great supplement to the will and provide your designated caregiver/trustee detailed information regarding habits and routine, medical concerns, and parental wishes about living arrangements. Only you know your child best, and if you’re not around to care for him or her, the person who takes over may find it very difficult to figure out what your child’s idiosyncrasies are and it could cause your child undue stress. Keep in mind this is not a legal document but a helpful companion to the will and trust.
No matter how your life is affected by special needs, you need to have a plan in place. We realize that you may be too overwhelmed and don’t know where to begin. We can help you get started and see you through the process over the years. In addition, if you don’t have a support network in place, I would recommend contacting Down Syndrome Indiana or Easter Seals Crossroads.
Jim Cherco,
317-569-7621 jcherco@sfg-in.com.com www.specialneedsstrategies.com
As your personal situations change (i.e., marriage, birth of a child or job promotion), so will your life insurance needs. Care should be taken to ensure this product is suitable for your long-term life insurance needs. You should weigh any associated costs before making a purchase. Life insurance has fees and charges associated with it that include costs of insurance that vary with such characteristics of the insured as gender, health and age, and has additional charges for riders that customize a policy to fit your individual needs.
"Registered Representative of and securities offered through One America Securities, Inc., Member FINRA, SIPC, a Registered Investment Advisor, 11711 North Meridian Street #350, Carmel, IN 46032-9422(317) 569-7600 Insurance Representative of American United Life Insurance Company (AUL) and other insurance companies. Semler Financial Group, INC. is not an affiliate of OnaAmerica Securities or AUL and is not a broker dealer.
by guest blogger, Jim Cherco
Having a child with special needs presents many large and difficult challenges. Often families that have a child or children with special needs struggle with doubts and stresses about how best to raise and provide for their family now and in the future. If you are the parent of a child with special needs, the specialized care of your child is surely a very significant concern for you and your family. The job of devising a strategy for support that is ongoing and provides the long-term funding that is needed may be daunting enough that planning never gets started, much less, put in place. Have you considered who will care for your child in the event of your untimely death? Do you have a strategy in place for financing the care of your child as you (and your child) age? Perhaps, someone in your family has agreed to take over the care of your child when you are no longer able to do so. This can present its own challenges and stresses.
When I moved here to the Indianapolis area from Illinois back in 1989 I learned about the famous breaded tenderloin that is “as big as your head”. I asked a friend how on earth one goes about eating such a huge sandwich and he replied, “one bite at a time Jimmy”. I think you should approach your strategy for developing a life care goals are for your special needs child in much the same way. Take on one thing at a time and then move forward until your goals are complete, then review them annually and adjust it for the changes that life brings your way. Having a strategy in place can help to provide the quality of life you want for the child you love when you are no longer able to care for him or her. It will also give you the confidence you need, as a parent of a special needs child. The stress level you experience raising your child has been likened to that of a combat soldier, and can shorten your lifespan by up to 9 to 12 years. Having a strategy in place now to care for the future needs of your child can reduce some of your stress.
Fortunately there are programs that the government offers in addition to Special Needs Trusts (SNT) and Life Insurance that can provide options and funding for the ongoing care of a loved one with special needs. A combination of permanent whole life insurance and term insurance along with an SNT, is a great way to help provide financial care for your loved ones after you’re gone. While making sure that the funding is in place for a special needs child is important, permanent life insurance can provide much needed cash in an emergency.
Making it a priority to keep an updated will at all times that coordinates with an SNT is key to making your wishes known. Additionally, a letter denoting your detailed wishes can prove to be an invaluable asset. It can be a great supplement to the will and provide your designated caregiver/trustee detailed information regarding habits and routine, medical concerns, and parental wishes about living arrangements. Only you know your child best, and if you’re not around to care for him or her, the person who takes over may find it very difficult to figure out what your child’s idiosyncrasies are and it could cause your child undue stress. Keep in mind this is not a legal document but a helpful companion to the will and trust.
No matter how your life is affected by special needs, you need to have a plan in place. We realize that you may be too overwhelmed and don’t know where to begin. We can help you get started and see you through the process over the years. In addition, if you don’t have a support network in place, I would recommend contacting Down Syndrome Indiana or Easter Seals Crossroads.
Jim Cherco,
317-569-7621 jcherco@sfg-in.com.com www.specialneedsstrategies.com
As your personal situations change (i.e., marriage, birth of a child or job promotion), so will your life insurance needs. Care should be taken to ensure this product is suitable for your long-term life insurance needs. You should weigh any associated costs before making a purchase. Life insurance has fees and charges associated with it that include costs of insurance that vary with such characteristics of the insured as gender, health and age, and has additional charges for riders that customize a policy to fit your individual needs.
"Registered Representative of and securities offered through One America Securities, Inc., Member FINRA, SIPC, a Registered Investment Advisor, 11711 North Meridian Street #350, Carmel, IN 46032-9422(317) 569-7600 Insurance Representative of American United Life Insurance Company (AUL) and other insurance companies. Semler Financial Group, INC. is not an affiliate of OnaAmerica Securities or AUL and is not a broker dealer.
Tuesday, January 10, 2012
Tips for families with special needs
Financial Planning Tips for Families with Special Needs by guest blogger Keven Clasen at WestPoint Financial...
Tips for families with special needs
Provided by Kevin Clasen, a Special Care Planner with WestPoint Financial Group, LLC, a MassMutual Agency; courtesy of Massachusetts Mutual Life Insurance Company (MassMutual)
What is the sign of a good decision?®
It’s creating a life care plan for a special needs child.
A gift of cash from grandma, grandpa or anyone else could end up costing special needs families thousands of dollars in lost government funding and services – benefits that are critical in helping families pay the huge expense of caring for and educating their children with special needs.
Assets over a certain dollar amount may affect qualification for government benefits.
Key considerations
Consider the following tips for families and friends of children with special needs.
1. Do not give or accept financial gifts or assistance in the name of a child with special needs.
2. Deposit gifts into a special needs trust that benefits the child.
3. Be aware: there is no difference between gifts of cash, bonds, stock, property, inheritance, annuities, art and automobiles; they all count against the child’s net worth.
4. Plan ahead: any of these gifts can legally be given to the trust of a child with special needs and will not jeopardize government benefits if the trust is properly drafted in compliance with any particular state’s requirements.
5. Carefully monitor the child’s assets. Interest appreciation could increase their account value to exceed the $2,000 limit.
6. Volunteer to help care for a special needs child, so parents or guardians can have some time to themselves. Caring full-time for children with special needs can be very intense, expensive and demanding.
7. If your child has special needs, create a “Letter of Intent” to document exactly how you want he or she to observe the holidays and with whom, if you pass away – what type of gifts should or should not be given to them and what kind of life they want. A “Letter of Intent” template is available at: www.massmutual.com/specialcare/resources.
8. Consult an attorney specializing in special needs planning with regard to the feasibility of establishing a Special Needs Trust and ask a financial professional for help funding the trust.
9. Review your life insurance, making sure the policy does not benefit the child directly; proceeds that are generally tax free may be paid into the child’s trust.
10. Offer to become a trustee, a very special personal gift to help families and children who need sincere, reliable, dedicated people to manage their children’s trusts and future.
Creating a special needs trust is the first step in creating a life care plan for a special needs child. This type of planning is crucial, yet highly complicated and difficult to do without help, because the issues and laws are complex. Services by an attorney specializing in special needs planning are essential. Your financial professional can help assemble an integrated team of professionals experienced in the area of special needs and, ultimately, assist in funding the trust.
© 2011 Massachusetts Mutual Life Insurance Company, Springfield, MA 01111-0001
Insurance products issued by Massachusetts Mutual Life Insurance Company (MassMutual),Springfield, MA 01111-0001 and its subsidiaries C.M. Life Insurance Company and MML Bay State Life Insurance Company, Enfield, CT 06082
The information provided is not written or intended as specific tax or legal advice and may not be relied on for purposes of avoiding any Federal tax penalties. MassMutual, its employees and representatives are not authorized to give tax or legal advice. Individuals are encouraged to seek advice from their own tax or legal counsel. CRN201301-143562
Tips for families with special needs
Provided by Kevin Clasen, a Special Care Planner with WestPoint Financial Group, LLC, a MassMutual Agency; courtesy of Massachusetts Mutual Life Insurance Company (MassMutual)
What is the sign of a good decision?®
It’s creating a life care plan for a special needs child.
A gift of cash from grandma, grandpa or anyone else could end up costing special needs families thousands of dollars in lost government funding and services – benefits that are critical in helping families pay the huge expense of caring for and educating their children with special needs.
Assets over a certain dollar amount may affect qualification for government benefits.
Key considerations
Consider the following tips for families and friends of children with special needs.
1. Do not give or accept financial gifts or assistance in the name of a child with special needs.
2. Deposit gifts into a special needs trust that benefits the child.
3. Be aware: there is no difference between gifts of cash, bonds, stock, property, inheritance, annuities, art and automobiles; they all count against the child’s net worth.
4. Plan ahead: any of these gifts can legally be given to the trust of a child with special needs and will not jeopardize government benefits if the trust is properly drafted in compliance with any particular state’s requirements.
5. Carefully monitor the child’s assets. Interest appreciation could increase their account value to exceed the $2,000 limit.
6. Volunteer to help care for a special needs child, so parents or guardians can have some time to themselves. Caring full-time for children with special needs can be very intense, expensive and demanding.
7. If your child has special needs, create a “Letter of Intent” to document exactly how you want he or she to observe the holidays and with whom, if you pass away – what type of gifts should or should not be given to them and what kind of life they want. A “Letter of Intent” template is available at: www.massmutual.com/specialcare/resources.
8. Consult an attorney specializing in special needs planning with regard to the feasibility of establishing a Special Needs Trust and ask a financial professional for help funding the trust.
9. Review your life insurance, making sure the policy does not benefit the child directly; proceeds that are generally tax free may be paid into the child’s trust.
10. Offer to become a trustee, a very special personal gift to help families and children who need sincere, reliable, dedicated people to manage their children’s trusts and future.
Creating a special needs trust is the first step in creating a life care plan for a special needs child. This type of planning is crucial, yet highly complicated and difficult to do without help, because the issues and laws are complex. Services by an attorney specializing in special needs planning are essential. Your financial professional can help assemble an integrated team of professionals experienced in the area of special needs and, ultimately, assist in funding the trust.
© 2011 Massachusetts Mutual Life Insurance Company, Springfield, MA 01111-0001
Insurance products issued by Massachusetts Mutual Life Insurance Company (MassMutual),Springfield, MA 01111-0001 and its subsidiaries C.M. Life Insurance Company and MML Bay State Life Insurance Company, Enfield, CT 06082
The information provided is not written or intended as specific tax or legal advice and may not be relied on for purposes of avoiding any Federal tax penalties. MassMutual, its employees and representatives are not authorized to give tax or legal advice. Individuals are encouraged to seek advice from their own tax or legal counsel. CRN201301-143562
Thursday, January 5, 2012
The Importance of Special Needs Planning
Today's Guest Blogger is Gordon Homes, Special Needs Financial Planner and Parent with MetLife Center for Special Needs Planning to tell us more about the importance of special needs planning...
Caring for a dependent with special needs takes special planning.
Often we put off the task of planning as it can be overwhelming. This article will outline some of the steps you, with the assistance of a special needs financial planner and qualified attorney, should take to make their future more secure.
Letter of Intent
While the Letter of Intent is not a legal document, it is designed to serve as a roadmap for anyone involved with your child’s situation to utilize in understanding your child’s needs and your wishes for their future. This document is a working document, and serves as an ever changing caregiver’s guide, with everything from contact information for doctors,therapists, educators, government benefit offices, and providers, to medications, routines, schedules, food likes/dislikes, diet, etc.
Your Will
Addressing legalissues is a crucial step in planning for the future. Prepare a will if you don’t already have one or update your existing will to reflect what you want for your child. How do you want your estate to be distributed; who will be the guardian of your children? It may be especially important if you want to
limit assets going directly to a child with special needs. Without a will, generally state law will distribute assets to your children, including children with special needs.
Special Needs Trusts
Under current law, any inheritance of more than $2,000 ($1,500 limit for Indiana Medicaid) may disqualify individuals with disabilities from most federal needs based
assistance. A properly drafted Third Party Special Needs Trust (one set up and funded by a parent for example);however, may offer a means of protecting your child’s eligibility for these important benefits. Special needs trusts have evolved over the years, so an existing one may need to be updated. A special needs trust can typically be funded at any time with a gift or inheritance. If your child has or is in the process of receiving an inheritance, settlement, or back payment a First Party Special Needs Trust (one funded with the disabled individual’s money) may be needed. Having the correct type of special needs trust and engaging an attorney specializing in this area of the law is critical.
Guardian/Trustee
The guardian assumes responsibility for your child in the event of your death. Usually though not always, a family member will serve. There are two overarching questions the proposed guardian will be seeking to answer. How do I do this, and how will I pay for this? The planning process can help answer some of these types of
questions. The trustee oversees the assets in the trust. The guardian and
trustee can be the same or different people, each with a role in managing your
child, the money and the investments but all being involved and contributing to
their overall well being. Look at the options and decide what’s best for you and your family.
Financial
Sometimes sufficient financial resources to meet needs may not be available. The death of one or both parents can jeopardize your child’s financial future and quality of life. There are a variety of funding options for Special Needs Trusts. Discuss these options with a special needs financial planner and your attorney. What type of life do you envision for your child with special needs? How much money
will he/she need?
Gordon Homes, Special Needs Financial Planner and Parent
MetLife Center for Special Needs Planning
www.gordonhomes.metlife.com
(317)567-2005
MetLife and its representatives do not provide tax or
legal advice. Please consult your tax advisor or attorney for information regarding your own specific situation. Metropolitan Life Insurance Company (MLIC), New York, NY 10166. Securities products and investment advisorybservices offered by MetLife Securities, Inc. (MSI)(member FINRA/SIPC) a registered investment advisor. 545 Metro
Place So. Suite 175, Dublin, OH 43017. 614-792-1463. MLIC and MSI are
MetLife Companies. L1211229081[exp1112][IN]
Caring for a dependent with special needs takes special planning.
Often we put off the task of planning as it can be overwhelming. This article will outline some of the steps you, with the assistance of a special needs financial planner and qualified attorney, should take to make their future more secure.
Letter of Intent
While the Letter of Intent is not a legal document, it is designed to serve as a roadmap for anyone involved with your child’s situation to utilize in understanding your child’s needs and your wishes for their future. This document is a working document, and serves as an ever changing caregiver’s guide, with everything from contact information for doctors,therapists, educators, government benefit offices, and providers, to medications, routines, schedules, food likes/dislikes, diet, etc.
Your Will
Addressing legalissues is a crucial step in planning for the future. Prepare a will if you don’t already have one or update your existing will to reflect what you want for your child. How do you want your estate to be distributed; who will be the guardian of your children? It may be especially important if you want to
limit assets going directly to a child with special needs. Without a will, generally state law will distribute assets to your children, including children with special needs.
Special Needs Trusts
Under current law, any inheritance of more than $2,000 ($1,500 limit for Indiana Medicaid) may disqualify individuals with disabilities from most federal needs based
assistance. A properly drafted Third Party Special Needs Trust (one set up and funded by a parent for example);however, may offer a means of protecting your child’s eligibility for these important benefits. Special needs trusts have evolved over the years, so an existing one may need to be updated. A special needs trust can typically be funded at any time with a gift or inheritance. If your child has or is in the process of receiving an inheritance, settlement, or back payment a First Party Special Needs Trust (one funded with the disabled individual’s money) may be needed. Having the correct type of special needs trust and engaging an attorney specializing in this area of the law is critical.
Guardian/Trustee
The guardian assumes responsibility for your child in the event of your death. Usually though not always, a family member will serve. There are two overarching questions the proposed guardian will be seeking to answer. How do I do this, and how will I pay for this? The planning process can help answer some of these types of
questions. The trustee oversees the assets in the trust. The guardian and
trustee can be the same or different people, each with a role in managing your
child, the money and the investments but all being involved and contributing to
their overall well being. Look at the options and decide what’s best for you and your family.
Financial
Sometimes sufficient financial resources to meet needs may not be available. The death of one or both parents can jeopardize your child’s financial future and quality of life. There are a variety of funding options for Special Needs Trusts. Discuss these options with a special needs financial planner and your attorney. What type of life do you envision for your child with special needs? How much money
will he/she need?
Gordon Homes, Special Needs Financial Planner and Parent
MetLife Center for Special Needs Planning
www.gordonhomes.metlife.com
(317)567-2005
MetLife and its representatives do not provide tax or
legal advice. Please consult your tax advisor or attorney for information regarding your own specific situation. Metropolitan Life Insurance Company (MLIC), New York, NY 10166. Securities products and investment advisorybservices offered by MetLife Securities, Inc. (MSI)(member FINRA/SIPC) a registered investment advisor. 545 Metro
Place So. Suite 175, Dublin, OH 43017. 614-792-1463. MLIC and MSI are
MetLife Companies. L1211229081[exp1112][IN]
Wednesday, December 14, 2011
Congratulations to the 2011 Star Award Winners
Congratulations to the 2011 Star Award Winners!
Please join me in congratulating the 2011 recipients of the Down Syndrome Indiana Star Award!
The first award goes to Diane Knollman. Diane serves as a Special Education teacher in the Carmel School district and is the mother of Patrick, her 20 year old son with Down syndrome. The entire Knollman Family has been active with Special Olympics, Best Buddies and Down syndrome Indiana. Diane has been a developmental therapist, a tutor, a teacher, a mentor and a friend to many parents and students with a disability.
The next award goes to: Patricia Finkley – Patricia was chosen to receive the award for outstanding volunteer effort. She exemplifies commitment and servant leadership. Her dedication to the community around her is inspiring. For the past 5 years, Patricia has served Down Syndrome Indiana in an excellent manner and has helped wherever and whenever needed. Truly deserving of this award, the 2nd star award for 2011 goes to Patricia Finkley.
The third and final award of 2011 goes to Andi Montgomery – If there is any doubt that an airport can be a positive addition to the community, just look at what Indianapolis Executive Airport and Montgomery Aviation have done in the past five years for Down Syndrome Indiana. They have raised over $56,000 to enhance the lives of individuals with Down syndrome! This summer, they will continue their support with the 6th annual Fly-in on August 4th of 2012.
This year’s award is significant not only because of who the winners are but because the award itself was handmade by individuals with a disability, The Arc Artisans. A huge thank you to the Arc Artisans for making the arts more accessible to people with disabilities by engaging the power of the arts to use the abilities and accomplishments of these emerging artists to offer beauty and wonder to others in our community and beyond.
Please join me in congratulating the 2011 recipients of the Down Syndrome Indiana Star Award!
The first award goes to Diane Knollman. Diane serves as a Special Education teacher in the Carmel School district and is the mother of Patrick, her 20 year old son with Down syndrome. The entire Knollman Family has been active with Special Olympics, Best Buddies and Down syndrome Indiana. Diane has been a developmental therapist, a tutor, a teacher, a mentor and a friend to many parents and students with a disability.
The next award goes to: Patricia Finkley – Patricia was chosen to receive the award for outstanding volunteer effort. She exemplifies commitment and servant leadership. Her dedication to the community around her is inspiring. For the past 5 years, Patricia has served Down Syndrome Indiana in an excellent manner and has helped wherever and whenever needed. Truly deserving of this award, the 2nd star award for 2011 goes to Patricia Finkley.
The third and final award of 2011 goes to Andi Montgomery – If there is any doubt that an airport can be a positive addition to the community, just look at what Indianapolis Executive Airport and Montgomery Aviation have done in the past five years for Down Syndrome Indiana. They have raised over $56,000 to enhance the lives of individuals with Down syndrome! This summer, they will continue their support with the 6th annual Fly-in on August 4th of 2012.
This year’s award is significant not only because of who the winners are but because the award itself was handmade by individuals with a disability, The Arc Artisans. A huge thank you to the Arc Artisans for making the arts more accessible to people with disabilities by engaging the power of the arts to use the abilities and accomplishments of these emerging artists to offer beauty and wonder to others in our community and beyond.
Wednesday, November 30, 2011
Most significant legislation in years.....
Dear Down Syndrome Indiana Families,
Over the past 5 ½ years, I have had the pleasure of speaking with many of you about your hopes and dreams for your children whether they are newborns or adults. I know you want your children to grow up to live independently, have a meaningful career or go to college. The most frequent questions I hear are, “How am I going to pay for this?” and “How will saving affect my child’s benefits?” This is precisely why the ABLE Act is so important! It will allow you to save for the future needs of your child, such as, a college education or housing or transportation needs without negatively impacting the benefits they receive.
It takes a huge amount of effort to pass a piece of legislation. I was on Capitol Hill advocating for this ABLE Act in February 2009 and we are still trying to get it passed! Many others have been working on it longer. …. The point is your voice is needed now more than ever. Please contact your legislator today and encourage them to support the ABLE Act, also known as, the Achieving a Better Life Experience Act of 2011 (S. 1872/H.R. 3423). It isn’t hard, it’s not scary and you really do make a difference.
So often, when there is such a big and overwhelming issue such as this, we think that so many people are already participating in contacting their legislators that our own call or e-mail won’t make a difference but that’s not true. There really aren’t a lot of people stepping up to the plate to make this happen. An analogy…. I attend a huge and I mean HUGE church. One Sunday they asked for volunteers in their disability ministry and I thought, surely in a church this big, there are people just lining up to help out in this area so if I wait to sign up, I won’t be missed. But you know what? I was wrong! Out of the thousands of members, they still didn’t have enough volunteers to pair up one on one with children in Sunday school that needed extra support. Seriously?! It doesn’t take that many volunteers! (Yes, I signed up as soon as I found that out). It is the same with the ABLE Act, we think everyone else is calling in or writing but I assure you they are not.
I was on a conference call regarding this piece of legislation earlier this month and a long-time advocate and leader in the Down syndrome community said, “This is the most significant piece of legislation I have seen in years”. That is powerful when you have witnessed the growth in the disability movement throughout recent history, such as, the signing of the Individuals with Disabilities Education Act (IDEA), the Americans with Disabilities Act (ADA) and deinstitutionalization. In a speech given by Tom O’Neill at a Down Syndrome Indiana Annual Meeting in 2007, he said, “While the disability and the Down syndrome movement has come a long way, we haven’t yet arrived. We haven’t arrived at that place where we can sit back, admire our accomplishments, and rest on our laurels. While much as been accomplished, there are many challenges yet to address and the opportunities, too, remain many. The power in the Down syndrome movement- and there is power as we stick together and use it wisely – comes from our united strength”. So true. Let’s demonstrate our united strength and be a voice that cannot be ignored. So, again, please ask your legislator to support the ABLE Act.
Dedicated to enhancing the lives of individuals with Down syndrome,
Lisa Wells, Executive Director
P.S. Below you will find additional information.
ABLE ACT Webinar
In December , the National Down Syndrome Society(NDSS) webinar will be “ABLE Act 101 – Everything You Need to Know About the ABLE Act” on December 7th at 1pm Eastern.
The Achieving a Better Life Experience (ABLE) Act of 2011 (S. 1872/H.R. 3423) was just introduced in the 112th Congress in both the U.S. Senate and House of Representatives. When passed as a law, the ABLE Act will give individuals with disabilities and their families the ability to save for their child's future just like every other American family, and help people with disabilities live full, productive lives in their communities without losing benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources. The account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. During this webinar, you will learn the nuts and bolts about the ABLE Act and how you can take action to get the ABLE Act passed into law
Presenters:
John Ariale, Chief of Staff, Representative Ander Crenshaw (R-Florida)
Jennifer Debes, Legislative Assistant, Representative Ander Crenshaw (R-Florida)
Steve Beck, Parent; Board Member, National Down Syndrome Society; Board Member, Down Syndrome Association of Northern Virginia
Madeleine Will, Director, National Down Syndrome Society
Sara Weir, Senior Policy Advisory, National Down Syndrome Society
Slides from the presentation will be posted to www.ndss.org. During the webinar there will be time for Q and A.
Please register to attend this webinar. Seats are limited: https://www2.gotomeeting.com/register/608740234
You can read the full version of the bills here:
Senate - http://fifthfreedom.org/u/d0
House - http://fifthfreedom.org/u/d1
If this issue is important to you, you may wish to contact your representatives with your opinion. You can find contact information at http://fifthfreedom.org/findrep.php .
Over the past 5 ½ years, I have had the pleasure of speaking with many of you about your hopes and dreams for your children whether they are newborns or adults. I know you want your children to grow up to live independently, have a meaningful career or go to college. The most frequent questions I hear are, “How am I going to pay for this?” and “How will saving affect my child’s benefits?” This is precisely why the ABLE Act is so important! It will allow you to save for the future needs of your child, such as, a college education or housing or transportation needs without negatively impacting the benefits they receive.
It takes a huge amount of effort to pass a piece of legislation. I was on Capitol Hill advocating for this ABLE Act in February 2009 and we are still trying to get it passed! Many others have been working on it longer. …. The point is your voice is needed now more than ever. Please contact your legislator today and encourage them to support the ABLE Act, also known as, the Achieving a Better Life Experience Act of 2011 (S. 1872/H.R. 3423). It isn’t hard, it’s not scary and you really do make a difference.
So often, when there is such a big and overwhelming issue such as this, we think that so many people are already participating in contacting their legislators that our own call or e-mail won’t make a difference but that’s not true. There really aren’t a lot of people stepping up to the plate to make this happen. An analogy…. I attend a huge and I mean HUGE church. One Sunday they asked for volunteers in their disability ministry and I thought, surely in a church this big, there are people just lining up to help out in this area so if I wait to sign up, I won’t be missed. But you know what? I was wrong! Out of the thousands of members, they still didn’t have enough volunteers to pair up one on one with children in Sunday school that needed extra support. Seriously?! It doesn’t take that many volunteers! (Yes, I signed up as soon as I found that out). It is the same with the ABLE Act, we think everyone else is calling in or writing but I assure you they are not.
I was on a conference call regarding this piece of legislation earlier this month and a long-time advocate and leader in the Down syndrome community said, “This is the most significant piece of legislation I have seen in years”. That is powerful when you have witnessed the growth in the disability movement throughout recent history, such as, the signing of the Individuals with Disabilities Education Act (IDEA), the Americans with Disabilities Act (ADA) and deinstitutionalization. In a speech given by Tom O’Neill at a Down Syndrome Indiana Annual Meeting in 2007, he said, “While the disability and the Down syndrome movement has come a long way, we haven’t yet arrived. We haven’t arrived at that place where we can sit back, admire our accomplishments, and rest on our laurels. While much as been accomplished, there are many challenges yet to address and the opportunities, too, remain many. The power in the Down syndrome movement- and there is power as we stick together and use it wisely – comes from our united strength”. So true. Let’s demonstrate our united strength and be a voice that cannot be ignored. So, again, please ask your legislator to support the ABLE Act.
Dedicated to enhancing the lives of individuals with Down syndrome,
Lisa Wells, Executive Director
P.S. Below you will find additional information.
ABLE ACT Webinar
In December , the National Down Syndrome Society(NDSS) webinar will be “ABLE Act 101 – Everything You Need to Know About the ABLE Act” on December 7th at 1pm Eastern.
The Achieving a Better Life Experience (ABLE) Act of 2011 (S. 1872/H.R. 3423) was just introduced in the 112th Congress in both the U.S. Senate and House of Representatives. When passed as a law, the ABLE Act will give individuals with disabilities and their families the ability to save for their child's future just like every other American family, and help people with disabilities live full, productive lives in their communities without losing benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources. The account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. During this webinar, you will learn the nuts and bolts about the ABLE Act and how you can take action to get the ABLE Act passed into law
Presenters:
John Ariale, Chief of Staff, Representative Ander Crenshaw (R-Florida)
Jennifer Debes, Legislative Assistant, Representative Ander Crenshaw (R-Florida)
Steve Beck, Parent; Board Member, National Down Syndrome Society; Board Member, Down Syndrome Association of Northern Virginia
Madeleine Will, Director, National Down Syndrome Society
Sara Weir, Senior Policy Advisory, National Down Syndrome Society
Slides from the presentation will be posted to www.ndss.org. During the webinar there will be time for Q and A.
Please register to attend this webinar. Seats are limited: https://www2.gotomeeting.com/register/608740234
You can read the full version of the bills here:
Senate - http://fifthfreedom.org/u/d0
House - http://fifthfreedom.org/u/d1
If this issue is important to you, you may wish to contact your representatives with your opinion. You can find contact information at http://fifthfreedom.org/findrep.php .
Tuesday, November 29, 2011
DSI Star Award Nominations
To nominate an individual that has made a long-standing contribution to the Down syndrome community, please send your nomination to lisa@dsindiana.org. Three winners will be chosen and announced at the DSI Holiday Party on December 1oth.
Why a Star?
Focus: Parents, siblings, educators, and other friends and family often describe individuals with Down syndrome as "stars" or the center of attention. The star logo recognizes that quality, and reminds us of our need to challenge ourselves and society to see all individuals with Down syndrome for their contributions to their community.
Achievement: A star has long been a symbol of achievement. The star logo reminds us of the importance of all "achievements" of individuals with Down syndrome.
Inspiration: As a group of people familiar with the history of Down syndrome, we recognize that we are still at the beginning of our journey to discover the full potential of individuals with Down syndrome. The star represents our collective reaching for a brighter future for all individuals with Down syndrome.
Why a Star?
Focus: Parents, siblings, educators, and other friends and family often describe individuals with Down syndrome as "stars" or the center of attention. The star logo recognizes that quality, and reminds us of our need to challenge ourselves and society to see all individuals with Down syndrome for their contributions to their community.
Achievement: A star has long been a symbol of achievement. The star logo reminds us of the importance of all "achievements" of individuals with Down syndrome.
Inspiration: As a group of people familiar with the history of Down syndrome, we recognize that we are still at the beginning of our journey to discover the full potential of individuals with Down syndrome. The star represents our collective reaching for a brighter future for all individuals with Down syndrome.
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