Thinking about Siblings

Posted by Patty Manko on Fri, Jul 18, 2014 @ 10:55 AM

sibsjourney resized 600Brothers and sisters share the longest relationships on earth.  However, sibs are often not thought of when we talk about future planning for individuals with disabilities. 

SibsJourney held their annual conference for young adult siblings at Brandeis University over the June 20-22 weekend. The three young women who founded SibsJourney, Renee, Claire and Ellie, did an amazing job of pulling it all together, from fundraising to organizing.  It was great that Don Meyer, the creator of Sibshops, and Kate Arnold, director of the Sibling Leadership Network ( SLN) were on board.

They certainly understand that college-aged sibs are often overlooked and may need extra support, as most are in a transitionary period in their lives. Most have never spent significant time away from their sibling and are beginning to feel more responsible for their sibling’s care and wellbeing.  The goal of the conference was  to help sibs learn about resources, ranging from medical to legal to personal, and to join the  national movement of young adult sibs. Sibsjourney believes that siblings have tremendous power to advocate for quality services for their siblings in the midst of budget cuts and shrinkages. Ultimately, they hope to create a community of sibs that can learn from and rely on one another.

Cindy Haddad, CFP®, on behalf of the Massachusetts Dibling Support Network (MSSN) and Alex Nadworny,CFP®, both siblings of brothers with special needs themselves, were privileged to present at the conference. This is a time at which individuals with special needs are transitioning and there are many questions in the minds of the brothers and sisters. Where will their sibling work, live, play? What role will their parents have? What role will they have? Both Cindy and Alex found the organization and effectiveness of the conference and the compassion with which resources and stories were shared to be very impressive.

We will share a resource of our own for siblings, our SibTips.  SibTips is a combination glossary of terms and acronyms used in the disability community and practical tips for siblings to know. 

Here's a sample:

 Advocate:

An Advocate is someone who focuses on ensuring that the rights of a person with disabilities are met and not violated. Sometimes these services include special education, housing discrimination, abuse and neglect. They may be a paid advocate or a family member or friend who has the best interest of the individual at heart.

SibTip:  In the absence of a formal guardianship for your sib, you may want to become his or her advocate informally or formally with a Power of Advocacy. This will allow you to participate in the decision making aspects of their life particularly with residential, employment, and provider agencies. You won’t have any legal authorization, but you may already be acting as their “advocate” by standing by them as a sib.

   Download  our  Sib Tips

Tags: siblings

Our SibTips Ebook and Resources for Siblings

Posted by Patty Manko on Thu, Jan 16, 2014 @ 01:50 PM

Introducing our Ebook:

SibTips: Vocabulary and Useful Tips for Siblings by Cynthia Haddad, CFP & Alex Nadworny, CFP

describe the imageCindy and Alex would like to share a glossary of terms they learned over their many years of providing Special Needs Financial Planning to families. As siblings, they gathered some helpful tips to share and have included them as a SibTip with their respective term. Cindy and Alex also included a directory of terms classified by our Five Factors of Special Needs Planning. 

Download  our  Sib Tips

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From the Department of Rehabilitation Services and Bureau of Education and Services for the Blind-

Planning for the Future:

Setting Up Lifelong Supports for your Child

Saturday, April 5, 2014  10:00-3:30

  • A parent program on creating lifetime supports for your child. Presented by individuals with expertise in this field (including our Cindy Haddad!).
  • Topics include: guardianship, financial planning, special needs trusts, wills, Medicaid, sibling involvement and social security.
Click here for the informational flyer and registration form.
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describe the imageFrom the Sibling Support Project-

The Sibling Support Project Mission: We believe that disabilities, illness, and mental health issues affect the lives of all family members.  Consequently, we want to increase the peer support and information opportunities for brothers and sisters of people with special needs and to increase parents' and providers' understanding of sibling issues.

Click here to access their list of sibling related books.

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autism3 resized 600

 

For families of individuals with autism, Days of Whine and Rose has a reading list specifically for helping siblings understand autism.  Click here to access the list.

 

 

Tags: autism, siblings

For Sisters and Brothers: Our Sibtips

Posted by Patty Manko on Tue, Nov 26, 2013 @ 04:24 PM

James , alex, roxy copy 2 resized 600WE are both sisters of brothers with special needs. As we each step into the role of caretaker for our brother, there is a whole new world of terms and acronyms we need to learn. We call it the alphabet soup of special needs planning.
 
WE would like to share a glossary of terms we have learned over the past many years of providing Special Needs Financial Planning to families. As siblings, we have gathered some helpful tips to share and have included them as a SibTip with their respective term. have also included a directory of terms classified by our Five Factors of Special Needs Planning. 

Haddad Family.jpg copy 2 resized 600We hope you find this useful and we encourage you to share your tips and suggestions to make it an even better resource.  If it gets too overwhelming, know that we are here to help. 
 
Feel free to contact us at 781-756-1804 , on our website or via
Special Needs Planning on Facebook.
 
Enjoy the journey!!
 
Cynthia R. Haddad, CFP®, Ron's Sister
Alexandria M. Nadworny, James' Sister   
 
 
 Download  our  Sib Tips
 
 
              
                       
        

 

 

Tags: Special Needs Financial Planning, five factors of financial planning, siblings

Planning for a Child with Special Needs in Divorce

Posted by Patty Manko on Mon, Sep 09, 2013 @ 04:04 PM

divorce and special needs child resized 600Finding a fair and equitable agreement when parties are divorcing is often a challenge. When parents of a child with special needs separate and divorce, the challenge is magnified. Based upon both our personal and professional experience, it is critical to bring parents into agreement on a plan that does not take sides, but focuses on representing the needs of their child.

This means planning for families with unique sets of circumstances. We can help. 

  • Based upon our understanding of the obstacles children with special needs may have in growing up, we can describe and define the needs of the child.
  • Based upon the child’s unique situation, we can quantify the amount of financial support necessary to meet these needs, for the short- and long-term.
  • We will connecting parents, when interested, with various agencies that provide support services.
  • We inform parents about available government programs.
Importantly, we not only define the need but can work with the parties to realistically plan and make it achievable.

 We welcome an opportunity to discuss how our services can help in cases of divorce  and provide the best plan for a child’s lifetime supports.  As a basic resource not customized for families of individuals with special needs, download the pre-divorce checklist below.

Download our Pre-Divorce Planning Checklist

Tags: Special Needs Financial Planning, supports for special needs, siblings, Divorce, Government Benefits, special needs Divorce

Financial Factors in Special Needs Planning

Posted by Patricia Manko on Tue, Jul 30, 2013 @ 12:11 PM

nest eggStarting at a very young age we are taught about the value of money. Throughout our lives we associate the value of money to our life experiences such as paying for our own college education, purchasing a car, buying a house, saving for our own children’s college and our ultimate retirement – in addition to the daily expenses of our desired lifestyle.

Your Family's Financial Values or Standards

It is important to talk about the value of money and what it means to you because you can pass these values on to future caretakers and other family members. How you feel about money can also have an impact upon what you can achieve for your child's future. It does not do any good if you do not share your values of money with others. If parents do not articulate their vision, their financial capacity to achieve their goals and their financial intentions, their vision for their child may not happen. It is important to express your values to your financial advisors, trustees, guardians, and legal advisors, but also to your other family members. These individuals most likely will be the ones to follow through on implementing the plan that you have for your child.

SNP PLANNING POINTER:

Take a moment to ask yourself – What does money mean to me? Then take time to share those values with your family –this can be expressed in your Letter of Intent.

 Download a template for your Letter of Intent

Bringing Family Members into Your Discussions

There are many ways to discuss your vision and your finances. It is often easiest to begin this process in a gradual manner and in an informal environment. Although it is important to have all family members in agreement, scheduling initial discussions in a formal meeting or large family setting is not always the best. We recommend speaking to one child at a time, to get their feelings about their willingness to help. This will give them the opportunity to share ideas with you rather than you telling them what you hope will happen. Remember, caring for a family member with disabilities is a lifetime commitment that you do not want to force on anyone, yet it is important for them to know your intentions.

After everyone has had an opportunity to discuss their feelings and ideas in an informal way, you may wish to plan a discussion with everyone at once.  Since every family’s dynamics are unique, you will find the best way to communicate with your family. The following steps should help to move the communication process along smoothly:

  • Share your vision
  • Talk about the amount of money you plan to have available to support your vision. You do not have to reveal all of your financial matters. You can choose to only mention the financial aspects that pertain to the needs of the family member with a disability.
  • Determine the best person to take on each role. For example, who is the best with finances? That person may be a good trustee or trust advisor of a Special Needs Trust. Who is most involved in the day to day life of the child? That person may be a good guardian.
  • Ask family members if they feel able to perform their roles independently. If not,design your plan to give them resources to work with. For example, let them know that they could hire an investment advisor to help with the trust management or a social worker to help oversee supports.

In our combined 30-plus years of planning, one of the biggest obstacles that we have encountered is that people do not feel comfortable talking about how much money they have. Even professionals in the field of providing services to families, including government agency employees that serve families, do not feel comfortable talking about money or the specific costs of providing services to individuals with disabilities. 

SNP STORY:

Although Charles is receiving all the benefits that he is eligible for and living independently, we feel that it is not enough for him to simply have what the government provides. We supplement his expenses by about $1,000 a month. This gives him the sense of self-worth and control to be able to do what he likes rather than do what someone else wants him to do. He has schizophrenia and his sense of self-worth is most important to his ability to function in life. In working with our financial planner and our attorney, we made arrangements for our other son to provide this supplement to support Charles’ needs without jeopardizing his government benefits when we are no longer able to. 

-- Charles’ father

Sometimes parents feel that they must treat all of their children equally. They feel that their children expect it. However, in many cases children without disabilities are more than willing to forego any type of inheritance to guarantee security for their brother or sister with  a disability. They understand the financial realities and would rather make sure their brother or sister is taken care of and would not expect that everything is shared equally.

One of the first steps that is required for you to be able to achieve financial security for your child is to overcome the reluctance to discuss the issues of money. We all know it takes money to provide services, staff, housing expenses, employment supports, transportation, education, health care services and the like. We also know that the government does not have an endless supply of money to funed these services.

Maximize Eligibility for Government Benefits

With this in mind, families should plan to maximize eligibility for governmenaboutof what funds are available to your family member– both personally and publicly –how to secure them and how to allocate them. We will be posting a blog about public resources, which we call government factors,  within the next few weeks.

Understand Where You Are and Where You Would Like to Be

In order to maximize your own personal resources, you must first understand where you are financially. Do you have the money to do the things you and your family like to do today? Are you happy where you are financially? If not, what can you do to change things?

The next step is to know where you want to be. What lifestyle do you envision for you and your family, today and in the future? What do you consider retirement – is it when you stop working full time, when you stop working the hours that you currently work, or when you begin to work part time or pursue a hobby for income?  What do you want to do for your vacations, travel time, fun time, and the like?  How philanthropic do you want to be? Where do you envision living when you retire?  In what type of environment do you envision your child living ?  Do you envision him or her living totally independent from you or do you intend to always be involved in the daily activities of your child's life for as long as you are able to?

Create a Plan

The next step is to prepare an action plan to get you where you want to be financially. This is where having qualified advisors to guide you through the planning process can be most beneficial.

The key issue to consider in the financial factors is maximizing personal resources. This includes maximizing tax planning strategies – both income tax and estate tax planning. The proper use of financial products can also be a key factor to financial success. You should also incorporate your group employee benefits in the planning process.  These would include your group health, life and disability insurance coverage,retirement plans, stock option plans, stock purchase plans, flexible spending plans, etc..  Determine those that are currently available to you and your family as well as those available to your family upon your death and /or retirement.  You should also determine which employee benefits are transferable and/or portable upon  termination of your employment.  Adequately protecting your income and assets in the event of a premature death and/or disability of a parent is critical.

Any type of planning process, from planning a vacation to building a house, has a defined beginning and ending point. The traditional financial planning process involves identifying resources and listing specific goals that can be quantified. Some common examples of quantifiable goals might include paying cash for your next automobile, saving for four years of college tuition payments ,purchasing a second home for retirement, or generating a retirement income equal to 65%-75% of your pre-retirement income.

Planning for a family member with disabilities can be a much more challenging process. There is no defined beginning or ending point. Needs and abilities of the individual can change rapidly and will vary significantly over time. It is only natural for the family of a young child to want to have a concrete plan in place that provides adequate assets and resources for their child’s lifetime needs. Families must realize, however, that it may not be possible to predict accurately the long-term costs involved in providing supports for an individual over his/her lifetime.

Assumptions can be made of future expenses. We can fairly accurately determine the costs of a physical residence – a house or a condo – in a geographic area based on current market values. We can also estimate the costs of maintaining the physical residence. Often, however, we cannot always accurately determine the costs of supports until the needs are identified. Once the needs are somewhat identified, we can develop a range of the probable expenses necessary to provide these supports today and in the future. Before implementing a residential plan it is highly recommended that you work with an independent consultant to determine the level of supports required. You then need to develop a model that meets both your personal preferences and your financial abilities to maintain the model, both during your lifetime and upon your death.

So how do we determine how much money is needed? And how much is too much? Just as the educational needs of every child are unique, so are the long-term planning needs of every individual with special needs. Even two individuals with a similar medical and/or cognitive diagnosis, can have significantly different support requirements. With these varying requirements, costs will also vary. There is no clear answer; the best we can do is to maximize all resources and coordinate all of the Five Factors.That is why it is so important to have a comprehensive plan and to reevaluate it periodically.

We have been there both personally and professionally. We can help.

Tags: Special Needs Financial Planning, siblings

News and Information for Families with Special Needs

Posted by Patricia Manko on Mon, Jul 22, 2013 @ 11:40 AM

Click here to download a full size, printable version with enabled links. 

SNFP Event Calendar Summer2013 PKM v2 resized 600

Tags: Special Needs Financial Planning, autism, siblings, Special Needs Events in MA

Siblings and a Letter of Intent

Posted by Patricia Manko on Thu, Nov 08, 2012 @ 05:18 PM


describe the imageParents should make a point to complete the Letter of Intent to document the important aspects of your child’s life. Share it with the future caretakers today, including siblings and make it a living document.  Don’t just leave it for them after you are gone.

 Determining Roles for Siblings to Play

 A pragmatic approach is an effective means to define a role for siblings. This approach can utilize assigning defined responsibilities.

Responsibilities may be shared.  Tasks and roles may be shared, which will allow a sibling to contribute without feeling overwhelmed that they have to be the ” everything” or “IT” person in the family.

Partner with a professional. Siblings can partner with experienced special needs planning professionals to help them provide the best solutions for their brother or sister.

describe the imageSome functional roles siblings may play:

Caregiver, Guardian

Health care proxy, Power of attorney,

Conservator, Trustee, Trust advisor

 Investment manager, Tax preparer,

 Bookkeeper to help pay bills,

 Representative payee for  SSI

  Advocate

                  Just be a brother  or sister!

For more information, click below to attend a presentation of No Sibling Left Behind or Planning is a Family Affair

Contact us for  further information

 

 

Tags: siblings, Letter of Intent, friendship, guardianship, special needs Letter of Intent

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