M & L Special Needs Planning, LLC

Social Security Recipients Are Expected to Get COLA in 2012

For the past two years those who receive Social Security Disability and Social Security Retirement have not received a cost of living increase to their benefit amount. But in 2012 this is expected to change, when an announcement is made this week and will be effective starting this January This increase is because for the first time in the last 2 years the consumer price index - a measure of how much it costs consumers, on average, to buy things like food and transportation - rose considerably from a year ago. Social Security cost-of-living adjustment (or COLA) is calculated using this index, and payments are increased when the measure jumps from one year to the next. Based on this index data, the raise is likely to be about 3.5%. A person who receives $10,000 from Social Security last year would receive an extra $350 in 2012. However, some of this increase will be lost to higher Medicare premiums, which are deducted from Social Security payments. Medicare Part B premiums for 2012 are expected to be announced next week, and the trustees who oversee the program are projecting an increase.

A Few Tips to Help You Find the Information You’re Looking for on Disability.gov

1. Visit our "How to Use This Site" section for an overview of different ways you can locate the information you need.

2. Go to the "I want to" section on Disability.gov's homepage. It's located just to the right of "News & Events." You'll find information about these and other subjects:

. Tips for searching for a job . Scholarships and financial aid for education
. Resources for people interested in becoming self-employed or starting a small business
. Housing information
. Information about disability benefits and how to apply
. Federal government grants

3. Looking for information about programs and organizations closer to home? Visit Disability.gov's "Information by State" section. Choose your state, and then pick a subject area from the center of the page, for example, housing, benefits, education, etc.

4. Use Disability.gov's search located in the upper right corner of every page of the site. Type in a word or phrase that describes what you are looking for information about, for example, housing, autism, Social Security disability, etc. If you get too many search results, go to "Narrow My Results" on the right side of the page. Check one or more of the boxes to narrow your search by topic, audience or your state. Then click on search again.

5. Choose one of the ten topics listed under "Information by Topic" on the left side of every page, for example, Benefits, Employment, Housing, etc. Then browse through the topic folders under each section.

6. Visit Disability.gov's Site Map for an overview of how all the information on the site is organized, with quick links that take you right to each section.

Disability.Blog is another good source for information. You'll find discussions and commentaries about benefits and employment, resources for caregivers, and education information for students, parents and teachers. Social media users can follow Disability.gov on Facebook and Twitter. Also, be sure to check out Disability.gov's newsletter, Disability Connection. The October 2011 issue was released just a few days ago.

Remember, Disability.gov is a web "portal." This means that Disability.gov is a central point of access to comprehensive disability-related information on many different subjects. The resources on Disability.gov (more than 14,000 of them) come from hundreds of highly regarded government and private sector sources, many in your state. Information on the site is updated every day, so each time you visit Disability.gov, you'll find new resources on everything from Social Security, to employment, to finding affordable and accessible housing.

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We hope this information helps you benefit from the many resources that Disability.gov offers.

Apps for Autism Featured on 60 Minutes

Day Enrichment Program participant Joshua Hood is being featured in a segment with Lesley Stahl on 60 minutes this Sunday (10/23) at 7pm called “ Apps for Autism.”  Lesley came to the Sollar Wellness Center to shoot footage with Josh for this story.  You can learn more about this Sunday’s program and preview a video clip here or view the video below.

A MUST To Watch

A MUST To Watch WHUT (Howard University's PBS station) is airing an excellent program on transitioning students with autism into an adult mainstream lifestyle 'Autism: Coming of Age'. They investigate the huge lack of supports available once public school entitlements end and amazing success stories of those that have maximized the few available supports. It's scheduled to re-air Wednesday 10-19-11 at 8:00 on Comcast channel 32 in Montgomery County. Also check out their program schedule for documentaries on 'Decoding Autism' & 'Brain Injury Dialogues'. Sure to be enlightening!

New Medicaid Resource Available from The Arc

The Arc is excited to announce a valuable new resource available at www.thearc.org to help guide people with intellectual and developmental disabilities and their families through the complexities of Medicaid benefits, services and supports. The Medicaid Reference Desk offers detailed, state-by-state information about Medicaid benefits, a glossary of terms, answers to frequently asked questions, person-centered planning resources and a blog from The Arc’s training specialist about issues related to Medicaid, self-advocacy and person-centered planning. Medicaid is the largest source of financing for disabilities services in the United States. For people with disabilities and for those who provide their care, Medicaid serves as a valuable safety net. Often the only source of financial assistance for health care, Medicaid plays a critical role for people with disabilities in providing coverage and access to care. Medicaid is, however, extremely complicated. At least half of the funds for Medicaid programs come from the Federal government with the remainder coming from state funds. Federal law contains detailed requirements and limitations on eligibility, services, and financing. But, state law varies widely. This project was made possible by a grant from the U.S. Department of Health and Human Services, Administration on Developmental Disabilities (Grant No. 90 DN0215). We encourage you to explore the Medicaid Reference Desk via the Resources section of www.thearc.org or www.thedesk.info

Disability Scoop States To Get Millions to Boost Disability Employment

By Shaun Heasley September 28, 2011 T The federal government is sending more than $21 million to a number of states to address the specific needs of people with disabilities who are looking for work. California, Hawaii, Ohio, South Dakota, Tennessee, Washington and Wisconsin will each receive between $1.8 and $6 million of the new funds from the U.S. Department of Labor, officials said this week. The grants represent an expansion of a disability employment initiative that’s already underway in nine other states. Under the program, states are expected to use the money to boost “education, training and employment opportunities and outcomes” for young people and adults with disabilities who are unemployed or underemployed, including those receiving Social Security benefits, federal officials said. Specifically, the grants are intended to enhance coordination on employment issues between various agencies including vocational rehabilitation services, independent living centers and local nonprofits. In addition, the funds will help ensure that the Labor Department’s One-Stop Career Centers in the states are better equipped to aid job seekers with disabilities who currently rely on Social Security. “During these difficult economic times, it is important to ensure that all workers, including those with disabilities — who as a group face employment barriers even during times of prosperity — are able to benefit from the Labor Department’s employment and retraining services,” said Secretary of Labor Hilda Solis. “These federal grants will help to provide services and support to individuals with disabilities in seven additional states, and put them on the path to permanent and secure jobs.” Nine states — Alaska, Arkansas, Delaware, Illinois, Kansas, Maine, New Jersey, New York and Virginia — already receive similar grants. In addition to the new funds directed at states, the Labor Department is also sending $3.78 million to four centers located in Connecticut, New York, New Jersey and Washington, D.C. that conduct research and provide technical assistance on employment issues for people with disabilities.

Combating Autism Reauthorization ACT (CARA)

Written by the President and COO of Autism Society The Autism Society is pleased to report that the Combating Autism Reauthorization Act (CARA) passed in the Senate last night. The bill now goes to the President, who has already indicated he would sign it into law. CARA is very important legislation as it helps many living with autism by funding research, training and education. But it does not accomplish everything that needs to be done to help all those living with autism. We must do more. As we celebrate today, we must address a critical concern with the bill. The re-authorization continues the Interagency Autism Coordinating Committee (IACC), a federal advisory committee that serves as a key coordinating body for delivery of services and addressing autism research efforts. The Autism Society does not currently have a seat at this table. With government funding reduced, the need for the Autism Society, the largest grassroots organization helping families today, has never been as critical. The Autism Society continues to work with lawmakers and the President’s staff to secure our seat at this table, as well as representation for our partner autism organizations. With CARA passed, the Autism Society is setting its sights on reforming Medicaid. We need to ensure that valued Medicaid service funding provided to so many through state waivers is properly addressed in the current deficit reduction committee deliberations. Already, lobbyists are lining up to advocate for continued funding of various Medicaid efforts, which have been found not to be nearly as effective as the important in-home and community services provided by states through the Medicaid waiver. Without the Autism Society’s involvement in this discussion, we fear the voices of those needing Medicaid services will not be heard. Our collective work on the Combating Autism Reauthorization Act shows the success we can have when grassroots autism advocates and groups such as the Autism Society, Autism Speaks, the ARC of the United States and the Association of University Centers on Disabilities (AUCD) work together to help all those living with autism. Scott Badesch Autism Society President and COO

Draft Registration at www.sss.gov

All 18-year old males are required to register for the draft. If you look up information about how to register, you will be advised either go to the Post Office and fill out a draft registration form, or, to go this website, www.militarydraftregistration.com. Be aware, this military draft website is a third-party service provider and they charge a $25 fee to register. However, if you go directly to the Selective Service System website at www.sss.gov, you can register for free. Also, the Selective Service System has a special tab to answer the question of whether teens with autism are required to register, and yes, they are required to register. If they are ever called up for military service they will undergo a physical and mental evaluation which, presumably, would result in their being ineligible to serve.

Paying Your Child's Health Care Bills

The United Healthcare Children's Foundation (http://uhccf.org) has announced that new grants are available to help children who need critical health care treatment, services, or equipment not covered or not fully covered by their parents' health benefit plans. UHCCF provides grants to families to help pay for child health care services such as speech therapy, physical therapy, occupational therapy sessions, prescriptions, and medical equipment such as wheelchairs, orthotics, and eyeglasses. Parents and legal guardians may apply for grants of up to $5,000 each for child medical services and equipment by completing an online application at the UHCCF Web site. To be eligible for a grant, children must be 16 years of age or younger. Families must meet economic guidelines, reside in the United States, and be covered by a commercial health benefit plan.

NCLD Releases 2011 Edition of "State of Learning Disabilities" Publication

The National Center for Learning Disabilities (NCLD) released its biennial report: State of Learning Disabilities: Facts, Trends and Indicators. The publication provides the authoritative national and state-by-state snapshot of learning disabilities (LD) in the United States, and their impact on the ability of students and adults to achieve educational success and employment. State of Learning Disabilities also clarifies what a learning disability is and explains the common misperceptions associated with LD. The report documents significant advancements for students with learning disabilities as well as continued challenges facing older students, college students and adults with LD. Key Findings • The number of school-age children with learning disabilities has declined by 14% during the last decade. • 2.5 million public school students have learning disabilities and are eligible to receive special education – representing 42% of the 5.9 million students with disabilities, down from a high of over 50% a decade ago. • Learning disabilities do not include conditions such as Attention-Deficit/Hyperactivity Disorder, intellectual disabilities, autism, deafness and blindness, yet such conditions are often confused with LD. • More students with LD are graduating with a regular high school diploma (64%) than only a decade ago (52%) and fewer students with learning disabilities are dropping out of school (22%) than in 1999 (40%). • Students with LD attend postsecondary education at lower rates than their non-disabled peers. Only 10% of students with learning disabilities enrolled in a 4-year college within 2 years of leaving high school.

It is never too early to plan!

It is never too early to plan. Today is not too late; tomorrow might be. Death or the idea of it should not be the only impetus to begin the planning process. Instead, the focus should be on planning for life and all its uncertainties. Imagine taking a snapshot of your family and your plan as it exists today – this instant. What does it look like? What if you were unable to make changes? What would you do differently if you could make a change? Your intentions without action always have unexpected negative results. Have you considered all of the variables that can affect your family’s plan?1 Be proactive and create the comprehensive financial and life plan for your special needs family. 1. Special People Special Planning Peggy R. Hoyt

Stunning Prevalence Figures Revealed

5/18/2011 Dr. Young Shin Kim of Yale Child Studies Center has conducted a new autism spectrum prevalence study that has determined a prevalence of 1 in 38 students. A study in South Korea, led by Yale Child Studies Center expert Dr. Young Shin Kim, who is a native of South Korea but trained in both the US and Korea, has shown a prevalence rate of 2.64%, which is about 1 in every 38 individuals! This is a remarkable study that examined an entire target population of 55,000 children in a suburb of Seoul using state-of-the art screening and diagnostic instruments. According to co-author and MAAP Board Member, Bennett Leventhal, MD, “While we must await replication of the study to be fully confident in the numbers, we think it is likely the prevalence will be very similar in other countries and cultures.” Perhaps the most important finding of the study was that about 2/3’s of the children with ASD were in regular education schools and had not been previously diagnosed and provided services.

The Mission Project

The Mission Project One of the more difficult things to do for a parent of a young adult who has a disability is find appropriate housing--a place that provides a safe environment and yet promotes growth and independence. Sometimes this is relatively easy because the disability is slight and the child is capable of holding a job and living totally independently. Or, on the other extreme, the child needs full time care and supervision. But what about those in between: those who are high functioning, but not quite to the point of really being able to live completely on their own, yet they are beyond living in a group home and are stifled living with their parents? Where can they live? What if there was a community where: • individuals who have a disability could live in their own apartment, but have a group of similarly situated friends nearby; • there were within walking distance restaurants, grocery stores, places to shop, swimming pools, a gym and other recreational facilities where they were welcomed; • the police and shop owners recognized and watched out for them; • their parents were involved in, but not controlling, their lives; • they could get together as a group and openly discuss any problems they are having with a counselor who can help guide them; • they could take dance lessons, acting lessons, computer lessons and exercise classes if they want, but were not forced to participate; • they could have a job, reliable and free transportation to and from the job, and even a job coach if one is needed; • there were opportunities to plan a group trip, pick the place to go, save money towards the expense and travel with their friends to places like Chicago, St. Louis, Cozumel and the Rocky Mountains; • there was a telephone hotline answered 24 hours a day by someone they know, who cares about them and will answer their questions about anything they want to know at that moment. Wouldn't that be a nice place to live? So you think this is a utopian dream? Well think again. Such a place exists in a suburb of Kansas City. It all started in 2003 with the vision of three couples, all parents of a child with a developmental disability who was in his or her early twenties, living at home and, although comfortable, was becoming bored and on the verge of no longer advancing. After encouraging their respective children during their early years to push themselves and become more independent, the parents now found themselves enabling their children to regress and plateau in their own homes. So the parents began researching available options locally and across the country. Nothing seemed to fit. After hours of discussions that sharpened their focus, they developed core values to guide them through a design process for a new community. They wanted, first of all, a place that was safe for their children. Next came employment, then continuing education, physical fitness, social activities, parental input (not control), increasing independence and continuity. These parents looked all over Kansas City for a community that satisfied their core values and settled on the older, close-in suburb of Mission, Kansas. They then named their dream "The Mission Project." Buying an apartment building for housing was considered, but rejected. Not only would it require a large outlay of money and debt, but it would make it more expensive and complicated when other families joined. Also, they did not want to become landlords, and they wanted the flexibility to move elsewhere if the community changed. They found an apartment complex, met with the manager and shared their vision - each child living in a separate apartment, paying his or her own rent through SSI, Section 8 vouchers and jobs, having parents and case managers who would be around but not living there. The manager agreed and The Mission Project found a home. Next the parents met with the mayor, city council, police and local businesses for the purpose of sharing with them the parents' vision and the purpose of the project. They also assured these community leaders and business owners that The Mission Project would not become too large and overwhelm the community with young adults who had disabilities. The parents wanted to make sure that their children would not be discriminated against, ridiculed or feared if they were walking around the community alone or in a group. In order to help support the local businesses that were interacting with their children, the parents instituted "Mission First," a commitment to first try to purchase anything they wanted in Mission. So now the parents drive from other communities in the Kansas City area to Mission to buy their groceries, hardware and anything else they can purchase from the local merchants. The first participants moved in during the summer of 2004. Today it has grown into a community of fifteen individuals who have all of the amenities described above, plus more. Each participant has a family member who is a voting member of the non-profit corporation that is The Mission Project. All of these members have a job, ranging from serving on a committee (such as the steering committee, fundraising, government relations, membership, education, social, etc.) to answering calls that come into the helpline, overseeing the newsletter the participants produce or chaperoning outings such as movies, bowling, dancing or group trips out of town. A goal of The Mission Project is to foster and promote independence and self-governance in the group and in individual lives. A supports scale was developed and success is measured in terms of growth of the participants towards independence, individuality and as part of the larger Mission Project community. Results are very positive. The vision of the founding parents is coming true. Because there is not space in this article to fully describe this program, you are encouraged to check out their website at www.TheMissionProject.org. If you want even more information, feel free to contact them directly. You will find a group of people who are not only excited about what they are experiencing, but are very willing to help and share with others. ________________________________________ Related Innovative Housing Models Research Note to Families from Special Needs Alliance Publications Committee: Nationwide, families of adults with disabilities are searching for ways to develop independent, supportive housing for their kin. The Mission Project is a wonderful example of an innovative and cost-effective plan that was developed, funded and managed by parents themselves. A group in Western North Carolina is working to support family efforts to develop housing where adults with a wide variety of disabilities can live independently. Now we need your help. To save research time for individual families getting started on this difficult journey, we are compiling a list of innovative housing models from around the country to be posted on a website currently being built (myownkey.org). Please send information about plans for supportive housing that you are part of – or know of - to djohnston@vwlawfirm.com. Please put HOUSING PLAN in the subject line. Don’t be shy! Simple plans that have worked for your family will be useful to others. Information about plans that have not worked, and why, could be just as useful. ________________________________________ About this Newsletter: We hope you find this newsletter useful and informative, but it is not the same as legal counsel. A free newsletter is ultimately worth everything it costs you; you rely on it at your own risk. Good legal advice includes a review of all of the facts of your situation, including many that may at first blush seem to you not to matter. The plan it generates is sensitive to your goals and wishes while taking into account a whole panoply of laws, rules and practices, many not published. That is what The Special Needs Alliance is all about. Contact information for a member in your state may be obtained by calling toll-free (877) 572-8472, or by visiting the Special Needs Alliance online. ________________________________________ Requirements for Reprinting this Article: The above article may be reprinted only if it appears unmodified, including both the author description above the title and the "About this Newsletter" paragraph immediately following the article, accompanied by the following statement: "Reprinted with permission of the Special Needs Alliance - www.specialneedsalliance.org."

Be Careful What You Wish For

There is a statistic which states "32% of special needs parents spend more than 40 hours per week on special needs related issues, or time equal to a second full-time job" MetLife Survey

Since I launcehd this business every day has become busier. I am incredibily grateful to all the families who are eager to have an initial consult after one of M&L Special Needs Planning seminars and than proceed to hire us. In addition, we have been honored to speak at fantastic venues like the Pentagon and the Accessibility Summit at McLean Bible to name a few.

However, one has to be careful for what one wishes. All this success is taking me away from my family which is my first and most important job. Honestly, before launcing this business I was already busy with my own special needs daughter and my typical 16 year old!

So now it is time to take a step back and try to keep things in perspective with my priorties in order - my beautiful daughters first and than helping all the wonderful families who understand M&L Special Needs Planning's mission of creating the quality of life and peace of mind for the special needs family making sure the basics are covered to prepare for the what ifs in life.

Now back to my family.

Scholarships for Students Diagnosed with ADHD

Students in the United States
diagnosed with Attention-Deficit/Hyperactivity Disorder (ADHD) who are planning
to pursue higher education have a new scholarship program
opportunity. The Shire ADHD scholarship is intended for US
residents accepted to or enrolled in an undergraduate program at an

accredited two-year or four-year college,
university, vocational or technical school as an undergraduate student that
have been diagnosed with Attention-Deficit/Hyperactivity Disorder (ADHD) and
are under the care of a licensed health care provider for
ADHD. Each award recipient wi! ll receive $2,000 and 1-year
of ADHD coaching services. The coaching, provided through the Edge
Foundation (www.edgefoundation.org
), includes weekly sessions in which students set weekly goals and action
plans to meet those goals and have e-mail and phone support from their
specially trained coaches to help keep them on track.

Twenty five one-time
scholarships will be awarded on August 9th, 2011. For information on the
scholarship program and the application, visit www.ShireADHDScholarship.com. The
deadline to apply is July 7th, 2011.

Scholarship
Questions? Call 1-855-474-4732

The HSC Foundaton Family Circle Grant

The HSC Foundation has recently awarded TLC an exceptional grant to help families who have a child with special needs between the ages of 14 and 26 who need help planning their children's futures and do not have the expendable income to commit to this type of planning. TLC has partnered with M&L Special Needs Planning, LLC to provide these services to qualifying families.

If your child with special needs is between the ages of 14 and 26, M&L Special Needs Planning, LLC can assist you with:

• Discussion of Estate Planning Documents & Advance Directives for Special Needs - Special Needs Trust

• Risk Management/Insurance Needs (life, disability & long term care)

• Proper funding and beneficiary designations for retirement, insurance and investment portfolios

• Government Benefits Planning - SSI/Medicaid and SSDI/Medicare

• Letter of Intent • IEPs and the process of transitioning through age 21

• Applications for DDA and DORS Services in Maryland or appropriate agencies for those families living in Washington, DC or Virginia • Personal assessment of child's strengths & weaknesses to help facilitation decisions on employment, transportation opportunities, and post secondary options including college based programs and independent living programs

• Age of Majority (18) - Guardianship; SSI/Medicaid

TLC - The Treatment and Learning Centers is a local, non-profit organization in Rockville, MD founded in 1950. We offer many first-rate programs and services for the community, including a Family Hearing Center, childcare and preschool programs, testing and tutoring services and a community education program. Our mission is to improve lives and expand possibilities for individuals with special needs, and we specialize in services for children and adults with learning disabilities, helping them reach their full potential. Our pediatric services include speech-language and occupational therapy, interaction groups, summer programs, and The Katherine Thomas School, an independent special education day school for students preschool to 12th grade. For adults with disabilities, we offer multiple programs through our Outcomes Service.

Browse our website (www.ttlc.org) and read what our consumers say, or contact us for more information

The HSC Foundation (www.hscfoundatoin.org) is dedicated to improving access to services for individuals who face social and health care barriers due to disability, chronic illness, or other circumstances that present unique needs. The HSC Health Care System is a multi-faceted organization that weaves together a pediatric specialty hospital (The HSC Pediatric Center), a health care management plan (Health Services for Children with Special Needs), and a home health agency (HSC Home Care, LLC). The HSC Foundation serves as the parent organization to these nonprofit organizations, and together, they comprise The HSC Health Care System. The HSC Health Care System offers a comprehensive approach to caring, serving, and empowering individuals with disabilities.

In the arena of disparities and social and cultural barriers to services, the Foundation is currently focusing on the following areas:

• Youth transitions and employment readiness strategies

• Family supports, training, and advocacy

• Healthy lifestyles, awareness and education

Our guiding principles

• To work with partners on all initiatives

• To select initiatives that address an identified information or service gap and that add value to existing work

• To bring additional funding (federal, corporate, foundation) to initiatives by serving as funding partners that have local impact and national relevance

Our mission

The mission of The HSC Foundation is to facilitate access to appropriate services for individuals with special needs and their families in the Washington metropolitan area, and to participate in related local, regional, and national projects with government, private, and philanthropic organizations.

Achieving a Better Life Experience Act – the ABLE Act

At M&L Special Needs Planning, LLC we participate and present many seminars in areas of disabilities. One major theme we always emphasize is the individuals with disabilities can never have more than $2000 in their names. This is critical for the individuals with special needs to qualify for the government benefit of Supplemental Security Income (SSI).  The monthly government benefit of $674 for a single person is not much at all and it is supposed to cover food and shelter. Probably what may be more important is the Medicaid that is attached to the SSI. This typically becomes the health insurance for the individual with special needs.

Through discussions with parents there is a growing frustration of why there is not some type of savings plan like a 529 plan for individuals with disabilities. Well since 2009 there has been bipartisan support in the US Senate and the House of Representatives for the ABLE Act or better known as Achieving a Better Life Experience Act – the ABLE Act. This law would to allow individuals with disabilities and families to create tax advantaged savings accounts to meet their long-term ongoing support needs related to education, health care, employment, transportation and housing. The income is tax exempt and the assets held in the ABLE Account do not count as a resource when determining eligibility for any government benefits (SSI, Medicaid etc). Up to $500,000 can be put into this account until the individual with Disabilities reaches the age of 65.

So hopefully sooner than later we can see this Act passed and we can create a savings account similar to the 529 Plan for our loved one with disabilities.

The True Meaning of Letting Go

Transitioning for any individual can create anxiety. For individuals with special needs and their parents, it’s both frightening and exhilarating. The individual is preparing to leave the familiarity of his or her school in order to enter a new world of post-secondary education, employment, and a life of independence.  

Under federal guidelines, the process of transition for an individual with special needs begins at the age of 14 and continues to age 21/22.  For parents of special needs individuals, the ideal approach to transitioning involves working with your school’s transition specialist and your state’s department of vocational rehabilitation services, creating a plan that enables the young adult to move from the world of entitlement to that of eligibility. 

My daughter Ellie, at the age of 18, is in the midst of the transition process, which fills me with pride – and fear!  For the past 18 years, I have put my heart and soul into Ellie. With the help, guidance, and support of family and friends, medical professionals, Katherine Thomas School, psychologists, therapists, behavioral specialists, transitional specialists, neuropsychologists, and many others, I have done everything humanly possible to help Ellie become the person she is today: an individual with special needs who is capable of leaving home for continuing education. That’s right – Ellie is leaving home!

This summer, Ellie will begin a post-secondary program in another state, hundreds of miles away from me. If all goes according to plan, Ellie will graduate from this program in June 2014 with a vocational certificate, ready to live and work independently in the “real world.”

Ellie is going to her “college” and she is so proud. She has come a long way since being diagnosed at birth with OFD Type 1.  She is so excited she can hardly wait, while I am struggling mightily with letting go of my darling daughter. I am frightened to death!  I lose sleep and cry, worrying about how she will cope without me. Or is it about how I will cope without her?   Am I worried that Ellie won’t be okay without me, or that I won’t be okay without her? Her leaving will be a huge loss for me and in the same light I am so proud of Ellie.

On the other hand, I will finally have the time to focus on my other beautiful daughter, 16-year-old Emily. Despite having to settle for less of my time as I have been consumed with Ellie for all of her life, Emily has become a wonderful young lady with great aspirations including an Ivy League education, pre-med, and a career as a trauma surgeon.

Naturally, Emily is thrilled that she will have her mom all to herself for the next 2 years. And I am just as excited to be able to give her my undivided attention. She has dealt with a lot having a sister with special needs, as such siblings always do. It is time for me to give her what I have given Ellie – my entire heart and soul.  And in 2 years, when she too is ready to leave the nest, I will be filled with just as much pride and sorrow as I feel now with Ellie’s impending departure.

 

 

HAPPY THANKSGIVING EVERYONE 35 Years of Progress in Educating Children with Disabilities through IDEA

http://www2.ed.gov/about/offices/list/osers/idea35/history/idea-35-history.pdf

On Nov. 29, 1975, the passage of the Education for All Handicapped Children Act, now known as the Individuals with Disabilities Education Act (IDEA), guaranteed access to a free, appropriate, public education (FAPE) in the least restrictive environment to every child with a disability. The U.S. Department of Education's Office of Special Education and Rehabilitation Services (OSERS) has just published a new report, Thirty-five Years of Progress in Educating Children with Disabilities Through IDEA, which reflects on how far we’ve come, envisions the future of IDEA and celebrates the millions of people who have enjoyed access to the services and education as a result of this law.

 

Decision Time in Action: Ellie is Turning 18

It‘s that time. Ellie will be 18 on May 17, 2011. Where did the time go? My beautiful special needs child is soon going to be the age of majority, considered an adult with all her own rights! It is amazing how much responsibility is given to individuals when they turn 18, whether they are special needs or not. They can vote, sign contracts, go to war, marry, sign their own Individualized Education Program (IEP) and make all types of decisions independently of their parents. If you have set up a Uniform Transfer to Minor Account (UTMA) for your child, special needs or not, legally the money now belongs to the child. At 18, young adults can leave home and we cannot stop them; as parents, we technically do not have control over our children anymore.

I know that when I was 18, I was nowhere near mature enough to understand the complexity of most adult decisions. To think that these same rights apply to special needs individuals is downright frightening. Research shows that the typical brain does not fully develop until the age of 25, and sometimes as late as 30 -- so what does this mean for our special needs children? Depending on the level of disability, an 18-year-old special needs individual may have the maturity level of a 10-year-old child.

Given the sudden autonomy that greets individuals when they turn 18, parents of special needs children must be well aware of two important factors:

1)   Supplemental Security Income (SSI)
2)   Guardianship

Supplemental Security Income (SSI) is a federal program overseen by the Social Security Administration (SSA) that helps adults (and even children) with disabilities and very low incomes to pay for food and shelter.  It is a needs-based program; to be eligible for this government benefit, a person must be a disabled U.S citizen or legal alien who meets certain requirements and has income and resources (assets) below a certain limit.

SSA has its own definition of “disabled.” Basically, an adult must have a severe disability that has lasted or is expected to last at least 12 months, or that is expected to result in death. In addition, the disability must prevent the person from doing “substantial gainful activity” (SGA), meaning the person is incapable of making more than $1000 per month in 2010. A blind person does not need to meet the SGA requirement.

The income and resource (assets) limit is very important to understand. When a person with disabilities turns 18, he or she must not have more than $2000 in resources (assets) in his/her name. Resources include cash, bank account balances, stocks, bonds, investments, whole life insurance, retirement accounts and property.  However, such an individual may own a home, car, life insurance with no cash value (term insurance), certain burial funds, a special needs trust and property used for a job or business. 

The income limit really depends on the type of income they receive. “Unearned” income (Social Security Checks or pensions) must be less than $694 per month in 2010. “Earned” income (wages or earnings before self employment) must be less than $1432 per month before taxes in 2010.

The most money a person can receive from the SSI program is $674.00 per month. This is supposed to pay for food and shelter only. If a parent or another individual pays for food and/or shelter for the person receiving SSI, the $674.00 will be reduced by 1/3 for food and/or 1/3 for shelter. 

Once an individual qualifies for SSI, he or she will also qualify for Medicaid, which serves as that person’s health insurance. Medicaid varies per state. In many states, Medicaid automatically comes with SSI eligibility. In other states, you must sign up for it. A person can receive as little as $1.00 from SSI to get Medicaid. If a person has other insurance, Medicaid will become secondary, covering some costs the primary insurance does not. Sometimes, qualifying for Medicaid is far more valuable than the SSI benefit itself.

Many people ask how a person can possibly live off $674 a month. The answer is that there is a trust called the Special Needs or Supplemental Needs trust. This type of trust does not jeopardize the SSI government benefit or Medicaid, and can supplement the SSI for all the items an individual needs that are not food or shelter. This can be a stand-alone trust or a testamentary trust (in one’s will), with the beneficiary being the person with special needs.

It is very easy to confuse the SSI program with Social Security Disability Income (SSDI). SSDI is another SSA federal program that provides income to individuals with disabilities. SSDI is not a needs-based program like SSI. It is available to people with disabilities no matter how much money they earn or have. SSDI is available to any disabled worker, the disabled worker’s widow(er) and the disabled worker’s adult children who have been disabled themselves since childhood. When an individual qualifies for SSDI, he/she also qualifies for Medicare, which is different than Medicaid.

The other critical issue to consider when an individual with disabilities turns 18 is the decision regarding guardianship. Guardianship is a legal relationship created when a court appoints an individual to be a substitute decision maker for another person.

There are two types of guardianship: 1) of the person and 2) of the property or conservatorship.

Guardianship of the person by definition is just that -- a guardian is in control as if the person were still a minor, making all necessary personal and medical decisions. If a young adult with special needs runs away and a parent has this type of guardianship, the police can be summoned to find the young adult and bring him/her home. Without guardianship of the person, you cannot ask the police to retrieve a person who is legally an adult.

Guardianship of the property or conservatorship deals with financial decisions, giving control of the disabled individual’s money to the guardian. This prevents an individual with disabilities from entering into inappropriate contracts or giving his/her money away. If the person did enter into a contract, in most all cases it would be null and void.

Guardianship can be a costly endeavor in terms of both money and time. There are less restrictive ways to have control without guardianship. For example, regarding medical decisions, parents can implement a HIPPA Authorization and a Medical Directive on behalf of their young adult with special needs. This allows the doctors to share all information and medical records with the parents, and it allows the parents to continue to make the important medical decisions. Regarding guardianship of the property, the parents can have joint checking accounts and be the representative payees.

So, as Ellie’s mother, what am I going to do when my Ellie becomes an adult in May? First, we will definitely apply for SSI. I will gather all the important documents that prove she is special needs and has been her entire life.

The second issue of guardianship is a little more complicated. To be her guardian means restricting her independence. However, who is really mature at the age of 18? Ellie has had two kidney transplants, and medically I feel I still need to be in control. Therefore, I will most likely pursue guardian of the person (Ellie) so I can still be in charge of Ellie’s medical care. However, rather than become guardian of the property, I think I will become her representative payee and we will share a checking account. This way I can teach Ellie how to be financially independent and work within her budget without relinquishing total control to her. 

 

M&L Special Needs Planning Letter of Intent Introduction Letter

One of the most important documents we need to create for our family member with special needs is the Letter of Intent. This is a non legal binding document that is created and updated every year for the chosen caregiver in case he or she needs to slip into our shoes. I thought you would be interested in reading my introduction letter for M&L Special Needs Planning Letter of Intent. If you would like one of our CDs please email me. Enjoy.

TO THE PARENTS/CAREGIVER(S) OF THE SPECIAL NEEDS CHILD

When couples decide to start a family it is such an exciting and beautiful time in life. We all look forward to meeting the new addition to our family whether it is our first or fifth child. However, some of us realize at birth or soon thereafter our baby is not just right and we slowly start adjusting the hopes and dreams for our family and now our special needs child. We begin to understand our new reality of having a special needs child. I brought my baby home four days after birth and started the journey in the special needs world. From day one, I did everything the professionals told me to do and more. I am still listening, pushing the envelope and believing. We take one day at a time.

Regardless of how we all got here, the most important people in our child’s life are the parents or caregiver(s) of the special needs child. We are the ones who grieve over what is, cheer at all the milestones, and take the children to the endless hours of therapies, testing, appointments, IEP meetings, support groups. We learn about transition and residential living, and advocate advocate and advocate. We are the loudest voices for our special needs children. We want the absolute best for our children and we do whatever it takes to get there. We know what our child likes, dislikes, what their strengths and weaknesses are.

What if we are suddenly gone? Who will be you and know what you do for your child? As I say all the time, nothing can happen to me because no one knows Ellie and can do what I do for Ellie, but what if…

Hence, the M&L Special Needs Planning Letter of Intent - The road map for someone else to walk in your shoes. This document stipulates in words what you do for your child presently, your values, and your vision of your child’s future. This document allows you to share all that you have done for your child and what you see for his/her future.

The Letter of Intent has it all written out: goals, objectives, desires and concerns. All the knowledge that the parents control – the intangibles – the life decisions and direction you wish your child to be guided towards. The Letter of Intent also has the tangible information: the biographical, family, personal, medical, financial, legal and government benefit information. Fill in what is pertinent and leave the rest behind. If you know definitely who your future caregiver(s) will be, sit down with him/her and go through this Letter of Intent and answer the questions. Remember, it is imperative to have a second caregiver in place in case of unforeseen circumstances that prevent the original caregiver from fulfilling the role. We strongly recommend annually updating this information on your child’s birthday and share the changes with the future caregiver(s).

This Letter of Intent is one way to begin and continue to stay updated in the special needs planning process. All the basic information and the goals, objectives, desires and concerns are here. We as parents tend to delay this process, and at M&L Special Needs Planning, LLC, we are here to help you complete the Letter of Intent with this CD-ROM. All you need to do is fill in the blanks. Start with us at the workshop then call for a private meeting to help complete it. We will call to see how you are doing and help keep this critical planning guide up to date. Keep a hard copy and a copy on your computer. This document may be one of the most important things you do for your special needs child. I know it is for me. Take your time and do it right because once we are gone, there will not be the opportunity to change your vision and values, and share who your special needs child.

Sincerely,


Maedi Tanham Carney, CFP
M&L Special Needs Planning, LLC
5603 Potomac Avenue NW
Washington DC 20016
work (202)841-8362 fax (202)248-7635
www.specialneedsplanning.net
A passion to help. The knowledge and experience to deliver.

Is it Fair?

When we have children, we give ourselves over to them -- special needs or not.  When my daughter Ellie was diagnosed at birth, I decided right then and there I would do everything I possibly could for this baby. Two years later Ellie’s sister Emily was born, full of spirit, bright and beautiful, and without special needs. It has been an incredible joy to raise my two girls, although I am doing so in two very different ways and I constantly feel like Gumby! Because of Ellie special needs, she has taken more of my energy physically, mentally, and spiritually. The doctor’s appointments, the therapies, the testing, and the constant 24/7 worry– everything is about Ellie. I am doing everything I can to give Ellie as much ammunition to tackle life as possible. It is ongoing and an exhausting process.

If you ask Emily what it is like having a special needs sister, she would say her mother’s life is all about Ellie. This is essentially true, and it pains me beyond words. I have tried hard to be fair and give as much as I can to both of my girls. Emily has a great life and has been spared no privileges. However, she has always just wanted me without her sister.  No question that it is a struggle having a special needs sister. Emily has risen to the occasion and done the best she can. A lot of the feelings Emily has towards Ellie are perfectly normal, but Emily feels guilty for having those feelings because Ellie is special needs. This year, the girls will be 15 and 17 -- trying ages in life regardless of whether or not they have special needs.

All children are entitled to the unconditional love of their parents. My mother raised my three siblings and me completely equally – she could do that. We thrived because of this. She raised us to be independent, loving individuals. I have learned from the best. However, because of Ellie’s special needs she has consumed more of me, and though it is not intentional, Emily feels slighted.  It hurts me to ask, “Is it fair?”

We stress in our workshops the need to create supplementary expense worksheets for special needs children. They will never be 100% independent, so we must ensure they have what they need for the rest of their lives, even after we are gone. We need to make certain that they are set financially, physically, and mentally. Is it fair if most of our present and future resources go to the special needs child? I would love to leave my estate 50/50 to my girls, but is this fair? As I plan, I am making sure Ellie is provided for in a way that gives her the resources she needs so that Emily can have her independence. Emily will be able to choose how much responsibility she wants to take for her sister.  If it means more resources will be earmarked for Ellie so that Emily can make this choice, then I say yes, it is fair. Emily has given her childhood to her sister, so she deserves freedom as an adult. Of course I know that Emily will want to be part of her sister’s adult life, but she also has a vision of being a trauma surgeon when she grows up. So I say yes, it is fair to give more to Ellie; this will allow Emily the freedom she needs to pursue her goals.

Practice What You Preach

When I started this business my first clients were my friends then the referrals began. I see, feel and understand the stress and anxiety in everyone I work with. Dealing with the day-to-day challenges of parenting a special needs child is physically and emotionally exhausting.

“Thirty–two percent (32%) of special needs parents spend more than 40 hours per week on special needs related issues, or time equal to a second full-time job.”  (MetLife’s Survey “The Torn Security Blanket: Children with Special Needs and the Planning gap.”

Disability Scoop published an article on 11/10/09 “Autism Moms Have Stress Similar to Combat Soldiers” by Michelle Diament.

Mothers of those with autism reported spending at least two hours more each day care giving than mothers of children without disabilities. On any given day these moms were also twice as likely to be tired and three times as likely to have experienced a stressful event.

 

What's more, these moms were interupted at work on one of every four days compared to less than one in 10 days for other moms.

My daughter Ellie is sixteen, soon to be seventeen this coming May. It is amazing how time flies and it is petrifying. Reaching age of majority is another subject entirely, which I will discuss in another post.  Since Ellie’s birth we have probably been apart 120 days. Only twice was she gone for blocks of time - once for a Special Olympics sleep over camp in July 2005 and three and half weeks in the summer of 2006 when Ellie went to Summit Camp. Since 2006 we have been dealing with the kidney issues, which resulted in two kidney transplants between June 2008 and July 2009. I have been away for two to four days at a time and since June of 2008 we have been bonded at the hip.  

Whether or not we have a special needs child we need time to ourselves with significant others, other children or just being solo. If you are a single parent the intensity is double. Friends have always told me to take more time and do more things with others and to take a break from my children.  It’s ironic because I often hear myself advising clients on the importance of taking time for oneself.

Taking time for me is one of the hardest things I try and do. I feel as if I am one with my two girls; we are a family yes, but we are also individuals. The whole is the strongest when the individual pieces are at their best. I stress time away from your special needs child and other children. This is the key to being the best you can possibly be. I will make this my New Year’s resolution. How about you?

 

 

Living with a Special Needs Child

 

“How could I admit to anyone – much less myself – that you were not only the most wonderful thing that ever happened to me … but also the most exhausting, the most overwhelming?” Jodi Picoult Handle with Care

 

Nobody can possibly understand what it means to raise a special needs child unless you are a parent or sibling of the special needs child. One can sympathize but it is hard to believe one can truly emphasize. My family loves us but they can go about there own business and will never be the ones who carry the weight of worry about Ellie and her future.

 

This summer Ellie had her second kidney transplant surgery. My sisters were at the hospital but they had no idea what was going through my head. It was wonderful having them there, but all I could think about was what the other side of the operation will look like. Will everything be okay this time? Will Ellie's dad be okay after the surgery? After just eight months since Ellie's first transpant Ellie experienced a series of operations and two months of dialysis. In July Ellie was having her second kidney transplant with her dad as the donor. Here we were at it again!

 

Now almost three months later we can finally breath but for how long? All the numbers have been  perfect. Last week Ellie had a sonogram on the tranplanted kidney and it was a beautiful site. I cannot read sonograms but I saw colors of a Christmas tree which meant great flow of all kinds. It is amazing what can make a radiologist so excited. However, deep in my mind I can never let go that twinge of fear.

 

Nothing drives me more crazy than going to a seminar and the presenter 's experience with special needs is "a friend of a friend's sister was born with autism or my Uncle's girlfriend has kidney issues" Unless you are living with some sort of special needs, others can sympathize but there is a difference of understanding by living with it.  

 

At M&L Special Needs Planning, LLC we help families properly plan for the future of the special needs child and the family as a whole. Our past experiences, personal knowlegde, and professional expertise have enabled us to make a difference in the financial needs of many families. Because we are living with special needs, we truly understand the specific financial planning life issues of the special needs family.

 

We look forward to working with your family. Please come to our workshops.

My Story

In May 1993, I had my first child at GW Hospital in Washington DC. Ellie was immediately diagnosed with a syndrome called OFD Type 1. Oral-facial-digital (OFD). Ellie’s OFD was created by a gamatic mutation. With this syndrome there are many medical and cognitive challenges. At the age of 15 Ellie had a kidney transplant and we continue to have medical challenges.

This was the beginning of an unexpected journey that had no roadmap. Ellie is now sixteen years and attends a special needs school in Montgomery County.

While working as a Certified Financial Planner® (CFP) and being Ellie’s true advocate, I have gained a unique understanding of the challenges facing special needs families. Because of this experience, I have decided to devote my life and career to helping others prepare and plan for each stage of life from diagnosis through the inevitable death of the main caretaker. 

I sincerely hope others can learn from me and that I can help alleviate some of the fear, grief and worry.

 With this in mind, I have developed a series of workshops to share my knowledge in an organized fashion. Click here to view these workshops. 

I look forward to hearing your stories and questions.