Ask the Expert

Q:   I have a newborn with Down syndrome.  My friend has mentioned First Steps services.  How soon should we get started?
 

A:  Right now!  The First Steps program in Indiana provides Early Intervention (EI) Services to Children ages birth to 3 or who are at risk for developmental delays.  These services can include Physical Therapy, Occupational Therapy, Speech Therapy, Developmental Therapy, and Nutrition services as well as many others.  Getting started early with services is one way you can help to optimize your child’s development.  For more information contact Indiana First Steps at 317-232-1144 and press #2 or toll free in Indiana 1-800-441-7837 and press option #2.

Maria Stanley, M.D.

Ann Whitehill Down Syndrome Program

Riley Hospital for Children

Assistant Professor of Clinical Pediatrics

Indiana University School of Medicine

 

Take Action Today

In response to the events that took place at Westlake Elementary School in Wayne Township on Monday, February 4, 2013, where an 8 year old girl with Down syndrome came home from school with her legs  duct-taped as a form of disciplinary action, it leaves many families that have a loved one with Down syndrome or special needs wondering how this could still be happening. Down syndrome Indiana, affirms the right of ALL children with Down syndrome to be treated with dignity and respect in ALL Indiana schools and the inappropriate use of seclusion and restraints in schools needs to end!

According to the Arc of Indiana, currently, schools in Indiana are not required to have a policy regarding the use of seclusion and restraints in their school. Procedures designed to reduce inappropriate behavior should never stigmatize, humiliate, or call unnecessary attention to an individual’s disability. In addition, the presence of a disability does not confer license for treatment that is disrespectful, dehumanizing or harmful.  If an intervention would be unacceptable for use with students without disabilities, it cannot justify its use with students with disabilities.

Indiana is one of only 19 states with a law protecting students from the use and misuse of seclusion and restraints in some situations, such as, long term care facilities and people in our state prisons and even kids in juvenile justice centers, but nothing in statute for our students in schools. It is time that Indiana treats our students with the dignity and respect they deserve.

Please Take Action Now!

Indiana Senate Bill 345 (SB 345) requires local school boards to approve policies on the use of seclusion and restraints in schools.  The policy must outline training for appropriate school personnel on the use of seclusion and restraints when an imminent danger is present, outline a protocol for parental notification when seclusion and restraint is used, use standard definitions for common seclusion and restraint measures and puts for the intent that all students should be treated with dignity and respect in schools. 

SB 345 was heard in the Senate Education Committee last week and will receive a vote in that committee on Wednesday, February 13^th. Contact members of the Senate Education Committee and request their support of SB 345. Please do this today while it is on your mind and you are fired up about it!

Here is the list of Senators on the Education Committee:

Senator Dennis Kruse  s14@iga.in.gov

Senator Earline Rogers  s3@in.gov

Senator Carlin Yoder  s12@in.gov

Senator Jim Banks  Jim@JimBanks.us or s17@in.gov

Senator John Broden  s10@iga.in.gov

Senator James Buck  s21@in.gov

Senator Luke Kenley  s20@in.gov

-Senator Jean Leising  s42@in.gov

Senator Pete Miller  sen.petemiller@iga.in.gov

Senator Frank Mrvan  s1@in.gov

Senator Scott Schneider  s30@in.gov

Senator Greg Taylor  s33@in.gov

http://capwiz.com/thearc/in/issues/alert/?alertid=62373691

“We hear all too often of horrible incidents regarding the use of seclusion and restraints when used as a disciplinary measure, used without proper training and used as a first recourse.” Says Kim Dodson of the Arc of Indiana in a recent legislative alert on this topic.

Please do not let this happen to one more child in our state. Take positive action today!

Alert to Caregivers of Dependents with Special Needs

You May Need to Change the Beneficiaries of Your Life Insurance, Annuities, IRAs or Other Retirement Accounts

 

 
By Guest Blogger: Phil Clark
 

The process of special needs planning involves developing a total plan to provide for the dependent’s lifetime care. Ownership of assets must be coordinated with legal documents (such as trusts, wills and beneficiary designations) to avoid the loss or reduction of any government or other benefits for which the dependent may be eligible.

 

Assets can pass from one individual to another individual in a variety of ways. Assets may be transferred by sale or by gift. At death, assets may pass through a will or under intestacy laws and be distributed by the estate. Assets may be distributed by trusts.

 

Certain assets will be distributed through operation of law. These include assets held jointly (such as real property held in joint tenancy, or as tenants in the entirety) that avoid the probate process and go directly to another named person.

 

Other assets can pass through operation of contract. These usually include life insurance policies, annuities, IRAs, and certain other types of retirement accounts that permit the owner to name a beneficiary. These types of assets typically avoid the probate process (unless the estate is named beneficiary), passing directly to the named beneficiary.

 

Even the very best plans can go astray if all the pieces of the puzzle are not pieced together correctly. Distributions specified in wills can result in money going directly to a person with special needs (for example, a provision that requires that the residuary estate be divided equally among the decedent's children, with the share of any predeceased child being divided equally among that child's children or descendants of predeceased children). Payments made directly to a person with a disability can result in the reduction or even loss of government benefits.

 

How many caregivers of dependents with disabilities today have named their dependent as the beneficiary on a group or individual life insurance policies, IRAs, 401(k) plans, profit sharing plans, or defined benefit pension plans? How many people have forgotten whom they have named as beneficiary? How many people never named a beneficiary? When the caregiver dies, the terms of those policies and retirement plans will govern the distribution of the money - usually requiring distribution to the named beneficiary or, if none is named or living, to the estate. If the dependent with special needs receives the money, this could produce disastrous results.

 

When planning for the financial future of someone with special needs, all beneficiaries of insurance policies, pension plans, IRAs, and annuities, need to be reviewed. If the caregivers have established a special needs trust for their dependent with special needs, the trust should be named as beneficiary, so not to compromise their loved one’s benefit eligibility. One mistake, a forgotten policy, or a beneficiary designation not updated, can unravel the best of plans!

 

Due to the complexity of federal and state laws, you may require specially trained professionals to help you plan for the future of your dependent with special needs. A Special Needs Planner can work with your attorney and provide the financial and insurance products that may be needed to complete your planning. For more information about this and other related topics, you can call Financial Advisor Phil Clark at 317-574-2955 for a confidential consultation.

 

Pursuant to IRS Circular 230, MetLife is providing you with the following notification: The information contained in this document is not intended to (and cannot) be used by anyone to avoid IRS penalties. This document supports the promotion and marketing of insurance products. You should seek advice based on your particular circumstances from an independent tax advisor.

MetLife, its agents, and representatives may not give legal or tax advice. Any discussion of taxes herein or related to this document is for general information purposes only and does not purport to be complete or cover every situation. Tax law is subject to interpretation and legislative change. Tax results and the appropriateness of any product for any specific taxpayer may vary depending on the facts and circumstances. You should consult with and rely on your own independent legal and tax advisers regarding your particular set of facts and circumstances.

Metropolitan Life Insurance Company, 1095 Avenue of the Americas, New York, NY 10036.

L1111221507[exp0114][All States][DC,PR] SNP

Down Syndrome Indiana Launches Awareness Campaign

Down Syndrome Indiana (DSI), an Indianapolis-based not-for-profit that seeks to enhance the lives of people with Down syndrome, has launched an awareness campaign aimed at deconstructing negative stereotypes and replacing them with more positive perceptions of what it means to have Down syndrome.
 

The “Get to Know Me” campaign, which is scheduled to run throughout 2013, will be primarily focused in the social media and will tell the stories of Hoosiers with Down syndrome through photos, videos, and text. Creative elements of the campaign will highlight the diversity of personalities, talents, and abilities representative of the Down syndrome community.
 

“Personal stories seem to resonate more with audiences than facts and statistics,” says Lisa Wells, Down Syndrome Indiana’s executive director. “We’re not trying to make people experts on Down syndrome, we just want them to see it in a different light. We want to break some of the more harmful stereotypes that sometimes prevent people with Down syndrome from reaching their full potential.”

According to Wells, the campaign’s success would help DSI fulfill its mission to promote the growth and inclusion of people with Down syndrome within their local communities. “I’m confident that once people get a behind-the-scenes glimpse into the lives of people with Down syndrome, they will be more likely to consider them as candidates for friendship, employment, and higher education opportunities.”

Even the Smallest Estate Requires Planning

January is Financial Wellness Month at DSI

 

Please welcome an article by Gordon Homes as he shares with us some helpful tips on estate planning for families that have a child with special needs...

 

Even the Smallest Estate Requires Smart Planning

 

Prepared by MetLife
 

Provided by Gordon Homes, CFP^®

Senior Financial Services Representative, Special Needs Financial Planner

Many people think estate planning is necessary only for those with significant assets; however, even the smallest estates require smart planning to protect family members with special needs.

In its simplest form, an estate plan helps ensure your wishes are carried out, should you be unable to do so. This protects your family from making tough decisions as well as ensuring that assets are divided in the way you would have wanted.

Below are 10 steps to help caregivers get started in preparing for the financial future of their dependent with special needs. Each circumstance is unique, so caregivers should consider their own situation carefully.

Plan for future medical, educational and housing needs for your dependent. Start by thinking about what your dependent’s needs will be in the future – and develop your financial strategy based on these projections. What medical needs will they have.  Will they need funds for job or technical training? Will they need supported living or functioning independently?

 

Review beneficiary designations. To maintain eligibility for government benefits such as Medicaid, a dependent’s assets must not exceed $2,000. Check with close friends and family to see if they have designated your dependent to receive any inheritance or insurance benefits from their estate– if they have, it’s important that they leave this to a special needs trust (see number eight on this list for information on trusts). Don’t let well‐intentioned friends and family unknowingly cause your dependent to lose access to valuable resources.

 

Have a family meeting to discuss your dependent's future needs. Just as caring for a dependent with special needs is a family affair, so is the related planning. With the thoughts that you have facilitated your dependent’s special needs throughout their life, meet with your family members to discuss their concerns and options for future care. This is also a good time to broach the beneficiary designation or inheritance issue discussed above.

 

Speak with a special needs financial professional and create a team of professionals to assist you in planning. Once you have determined the current and future financial needs of your dependent with special needs, it’s important to pull together a support team that can help guide you through the variety of options available to you and your family. The composition of the team may vary depending on your unique situation, but it should include a special needs financial planner, attorney, and perhaps a health professional and school guidance counselor.

 

Contact local nonprofit organizations for additional resource support. Your local nonprofit may be able to provide resources that can help with planning or that supplement the standard services provided by government agencies. A good starting place is to first contact a nonprofit dedicated to your dependent’s special needs.

 

Apply for government benefits. Government benefits – such as Medicaid and Social Security may help provide for your dependent’s needs in the form of medical treatments, supplies, equipment, respite, financial assistance and more. Reach out to the Bureau of Developmental Disabilities (BDDS) and/or Area Agency on Aging.  Contact Social Security to find out what benefits your dependent may qualify for, or visit their website (www.ssa.gov).

Prepare your Last Will and Testament (review and update periodically). A Will declares how you want your estate to be distributed and allows you to select a guardian for your dependents when you die.  It may be especially important to prevent automatic asset distributions directly to a person with special needs, and to be cognizant not to leave your dependent with special needs any assets in excess of $1,500 (as discussed in number two above.).  Referral to special needs attorneys is available upon request. 

 

Consider setting up a special needs trust. This allows caregivers a way to provide for their dependent’s care and quality of life, without disqualifying them for government benefits.  Trusts can be set up either funded or unfunded, and must be overseen by a trustee – often a family member, caregiver, pooled trust or bank trust officer. Funds can be contributed gradually over the years, or the trust can be designated as a beneficiary of an inheritance or life insurance. The money in the trust must be used to enhance the dependent with special needs quality of life, and can help to supplement standard services and benefits provided by government agencies. Speak to an attorney experienced in special needs planning for more information.

 

Apply for guardianship and conservatorship, if applicable. Caregivers must apply for a guardianship or conservatorship to maintain legal control over financial and healthcare decisions once a dependent reaches the age of 18. This can take several months, so it’s best to start this process early. There are different levels of guardianship and conservatorship available, depending on the dependent’s capabilities and needs. For example, a limited guardianship could be solely for financial or healthcare‐related decisions.

 

Prepare a Letter of Intent. Although not legally binding, this document is important for providing direction for the person or persons who will care for your dependent with special needs and should be stored with other vital documents, such as your Will. Think of it as a “letter to the caregiver” – it can cover day‐to‐day care routines such as what medical assistance is needed, as well as quality of life guidance such as what entertainment and activities should be provided.

 

Having an estate plan can help you achieve peace of mind and protect your family in the event that you are unable to make decisions. It can take the burden off of your family and help ensure that your wishes are carried out.

Gordon Homes is a Special Needs Financial Planner with the MetLife Center for Special Needs Planning, bringing a unique perspective as a Parent.  He assists families with estate and financial planning, legal and government benefit issues involved in having a dependent with special needs.  Gordon is nationally recognized, contributing to articles in the Washington Post, New York Times and Kiplinger’s Personal Finance.  Gordon is also a Down Syndrome Indiana Sponsor. He is available to speak at parent support group meetings throughout Indiana and Kentucky on topics ranging from the recent Medicaid Waiver changes, Special Needs Trusts, Guardianship and Social Security.  Gordon has offices in Indianapolis and Louisville.  He can be reached at (800) 903-6380 ext. 5042, (317) 567-2005 or ghomes@metlife.com.

IRS Circular 230 Notice: The information contained in this workshop is not intended to (and cannot) be used by anyone to avoid IRS penalties. This brochure may support the promotion and marketing of insurance products. Your clients should seek tax advice based on their particular circumstances from their independent tax advisors.  Metropolitan Life Insurance Company, 200 Park Avenue, New York, NY 10166.

Metropolitan Life Insurance Company(MLIC), New York, NY 10166.  Securities and investment advisory services offered through MetLife Securities, Inc.(MSI)(member FINRA/SIPC), a registered investment advisor.  635 Maryville Center Dr., Suite 200, St. Louis, MO 63141.  MLIC & MSI are MetLife companies. L1112289864[exp1013][IN]

Congratulations to the 2012 Star Award Winners!

Please join us in congratulating the recipients of the 2012 STAR Awards!

The first award goes to Kim Dodson. Kim is the Associate Executive Director for The Arc of Indiana. She has been involved in major changes in the disability field including the 317 Plan closing all state institutions for people with disabilities, better child restraint laws, and first responder training requirements. Currently she is working on a seclusion and restraint law to protect children in Indiana schools.   Kim is a passionate advocate for those with Down syndrome and a very active part of our community.  

 

The next award goes to: Angie Everton. Angie is a former Board member for DSI. She has a humble spirit and works tirelessly on behalf of DSI. Not only did she serve as Board Secretary, she is the Chair of the Parent Support and Education Committee, Southside Parent Group Chair, and the Helping Hands Chair. She has planned events for Down Syndrome Indiana in the past, and organizes Melaina’s Ride every year to benefit the Down Syndrome Indiana.  Thank you, Angie, for everything you do to enhance the lives of individuals with Down syndrome!

 

The third and final award of 2012 goes to: Jean Updike. She works closely with the Indiana Postsecondary Education Coalition to get local universities to offer a program for individuals with intellectual disabilities at their campus. She is determined to bring the disability community together and is the changing face of education in Indiana. We are forever grateful for everything she has accomplished so far and look forward to what the future holds!

 

A star was chosen to represent Down Syndrome Indiana for three reasons:

 

The first is Focus: Parents, siblings, educators, and other friends and family often describe individuals with Down syndrome as "the star of the show” or the center of attention. A star 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.

The second is Achievement: A star has long been a symbol of achievement and reminds us of the importance of all "achievements" of individuals with Down syndrome.

The third reason is 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.

 

 

 

Wishing you Joy, Peace and Prosperity in the New Year!

Happy Holidays from the Down Syndrome Indiana Staff...