Overview
MetDESK® MetLife's Division of Estate Planning for Special Kids helps you to take steps to provide lifetime quality care that your child or dependent with special needs requires.
Planning for the future of an individual with special needs requires indepth knowledge of the federal laws as they pertain to government benefit eligibility and legal documents such as special needs trusts and guardianships. There are important financial considerations as well for providing not just lifetime care, but quality of life.
In planning for the future of your child or dependent, remember that you are the primary expert, but you may also need to turn to a number of other experts for assistance on such things as special needs estate planning. Though many of these issues can seem overwhelming, it is important you take the time with those experts today to provide for your child's tomorrow. Get more information
The same holds true for dealing with issues of medical insurance authorizations for specialized services and products such as physical therapy and medical equipment. It is also true when it comes to knowledge of the special education laws which most often require you to become an active advocate and participant in your child's education plan.
- One out of 9 children under the age of 18 in the US today receive special education services
- Out of 72.3 million families included in the 2000 Census, about 2 in every 7 reported having at least one member with a disability
- 20.9 million families have members with a disability
- Of the 20.9 million families reporting at least one member with a disability, 5.5 percent have both adults and children with a disability
- One in every 26 American families reported raising children with a disability
- One in every three families with a female householder with no husband present reported members with a disability
- An estimated 2.8 million families are raising at least one child age 5 to 17 with a disability
- Learn more about how this new, easy to use on-line tool created to help close this planning gap for parents with children with special needs
Source: “Disability and American Families: 2000” , US Census Bureau, July 2005 Report
What is MetDESK?
MetDESK®,MetLife's Division of Estate Planning for Special Kids is dedicated to helping families secure both lifetime care and quality of life for their children or other dependents with special needs.
MetDESK's mission is to help families plan for the future of their children or other dependents with special needs, including preserving government benefits and providing insurance and other financial solutions which can help provide lifetime quality care. The planning process begins with a complete review of your dependent's needs, future care plans, assessment of government benefit eligibility, and finally a review of your family's current financial and legal plans. Critical areas that must be addressed are:
- Government benefit eligibility requirements for Supplemental Security Income SSI and Medicaid
- Types of special needs trusts and knowing which are right for you
- Guardianship, conservatorship and client self-determination and empowerment issues
- Appropriate funding vehicles -- including life insurance, to help guarantee your child's future quality of life.
Achieving this award four consecutive times signifies MetLife's consistent leadership in responding to the special needs of families with children and other dependents with special needs
Services
MetDESK® specialists will help you determine your child's needs and funding options to address those needs.
While there are many types of life insurance, two-parent families survivorship life is usually the most appropriate vehicle to fund lifetime care for a person with special needs. Survivorship policies insure two people instead of one and pay a death benefit only after the death of the second person, when the money is needed the most. It is also generally less costly than insuring two people individually. Survivorship is a common funding vehicle in providing for the long term needs of a child with special needs.
Survivorship policies within the MetLife enterprise provide a policy split option when set up solely for the needs of a special needs child. This means that if the child predeceases his/her parents, they then have an option to split the policy into two individual policies.
Like most insurance policies, MetLife policies contain exclusions, limitations, reductions of benefits and terms for keeping them in force.
A MetDESK specialist will be glad to provide costs and complete details.
Info & Resources
If you have a child or dependent with special needs, you probably have already learned it's a much more challenging experience to get the best possible services and plans in place if you go it alone. There's no need to. MetDESK® provides a wealth of information and resources to assist you. Your MetDESK Specialist may be the most robust source for information and help but the information here will help you on your special needs planning journey as well.
Take this quiz to see how well you have planned for your family's future:
- Do you or your spouse/partner have a vision of how your child with a disability will live after you’re gone?
- Have you identified a guardian, conservator, or trustee for your child?
- Do you have a complete understanding of Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) government benefits?
- Have you begun setting aside money for your child with special needs?
- Do you have a written Letter of Intent?
- Are any children, whether they have a disability or not, being excluded in your will?
- Do you have a special needs or supplementary needs trust established to preserve government benefits?
- Have provisions been made to fund these trusts with assets or insurance?
- Have you coordinated your special needs planning with other relatives?
- Have you done everything possible to protect your child’s financial future?
- Have you planned where your special needs child will live if you are not around?
- Will your child be able to earn enough to care for himself or herself?
- Will your child have adequate health insurance?
Special Needs Issues in the News
Americans with Disabilities Act
Signed into law on July 26 1990, the Americans with Disabilities Act is a wide-ranging legislation intended to make American Society more accessible to people with disabilities. The ADAS prohibits discrimination against persons with disabilities. It applies to employment, government services, places of public accommodation and telecommunications.
It is divided into five titles:
Employment (Title I) Employers must provide reasonable accommodations to protect the rights of individuals with disabilities in all aspects of employment. Possible changes may include restructuring jobs, altering the layout of workstations, or modifying equipment. Employment aspects may include the application process, hiring, wages, benefits, and all other aspects of employment. Medical examinations are highly regulated.
Public Services (Title II) Public services, which include state and local governments, the National Railroad Passenger Corporation, and other commuter authorities, cannot deny services to people with disabilities participation in programs or activities which are available to people without disabilities. In addition, public transportation systems, such as public transit buses, must be accessible to individuals with disabilities.
Public Accommodations (Title III) All new construction and modifications must be accessible to individuals with disabilities. For existing facilities, barriers to services must be removed if readily achievable. Public accommodations include facilities such as restaurants, hotels, grocery stores, retail stores, etc., as well as privately owned transportation systems.
Telecommunications (Title IV) Telecommunications companies offering telephone service to the general public must have telephone relay service to individuals who use telecommunication devices for the deaf (TTYs) or similar devices.
Miscellaneous (Title V) Includes a provision prohibiting either (a) coercing or threatening or (b) retaliating against the disabled or those attempting to aid people with disabilities in asserting their rights under the ADA.
The ADA's protection applies primarily, but not exclusively, to "disabled" individuals. An individual is "disabled" if he or she meets at least any one of the following tests:
- He or she has a physical or mental impairment that substantially limits one or more of his/her major life activities;
- He or she has a record of such an impairment
- He or she is regarded as having such an impairment.
Other individuals who are protected in certain circumstances include 1) those, such as parents, who have an association with an individual known to have a disability, and 2) those who are coerced or subjected to retaliation for assisting people with disabilities in asserting their rights under the ADA.
While the employment provisions of the ADA apply to employers of fifteen employees or more, its public accommodations provisions apply to all sizes of business, regardless of number of employees. State and local governments are covered regardless of size. (Source Duncan C. Kinder with the assistance of the Job Accommodation Network, the Great Lakes Disability and Business Technical Assistance Center, and the ADA OHIO Steering Committee).
SSI law changes affect special needs planning across the 50 states.
Parents or applicants for SSI may be in for a real shock when they apply for SSI and present their special needs or supplemental needs trust for review by the Social Security Administration. Benefit determination delays, confusion, and incorrect determination decisions are commonplace, until more expertise and experience is gained with the new regulations. While eligibility criteria have tightened considerably, there are still planning opportunities available to families who want to plan for the future of their children with special needs. A basic understanding of the new regulations and state Medicaid law is critical to proper planning.
The Foster Care Independence Act of 1999 provides, generally, that trusts established with the assets of an individual (or spouse) will be considered a resource for SSI eligibility purposes. It also addresses when earnings or additions to trusts will be considered income. These provisions are effective for trusts established on or after 01/01/00. (See SI 01120.200 for trusts established prior to 01/01/00 and trusts established with the assets of third parties.)
The regulations define SSI eligibility in terms of the following definitions;
What constitutes a trust and what does not constitute a trust.
Definition of trust grantor, settler, trustee, or trust beneficiary
What trust resources, income, earnings or payments are excluded or not excluded for SSI eligibility purposes.
Treatment of trust assets set up before and after January 1, 2000.
Treatment of trusts established with the assets of a disabled individual
Treatment of trusts established with assets of third parties
Treatment of additional payments into trusts set up before and after January 1, 2000.
All trust documents are thoroughly reviewed by the Social Security Administration to make certain that they comply with the new law change. However, due to the complexity of trust documents and the complexity of the new regulations, incorrect benefit decisions are often made.
The new regulations call for close scrutiny as to whether any trust assets or income can be attributed to the disabled SSI applicant, or can be indirectly tied to the applicant. If any assets can be traced to the applicant, the SSA may deny benefits, require that assets be spent down below the $2,000 SSI threshold, or that payback provisions be written into the trust document. See SSA trust review procedures below;
01120.202 DEVELOPMENT AND DOCUMENTATION OF TRUSTS ESTABLISHED ON OR AFTER 01/01/00 PROCEDURE: DEVELOPMENT
General Development—Written Trust
Review the Trust Document Obtain a copy of the trust document and related documents and, if possible, review the trust to determine whether the:
- Trust was established before or after 01/01/00;
- Assets were transferred into the trust before of after 01/01/00;
- Trust contains assets of third parties;
- Individual is grantor, trustee or beneficiary;
- Trust is revocable or irrevocable;
- Trust provides for payments to the individual or on his/her behalf;
- Trust generates income (earnings, and if so, whether the individual has the right to any of the income);
- Trust contains a spendthrift clause that prohibits anticipation of any trust payments; and
- Trust is receiving payments from another source.
Which Instructions to Apply
| If the trust was established… | And contains… | Then follow instructions in: |
| On or after 01/01/00 | Assets of the individual | SI 01120.201 – .204 |
| Only assets of third parties | SI 01120.200 | |
| Before 01/01/00 | Assets of the individual transferred before 01/01/00 | SI 01120.200 |
| Assets of the individual all transferred on or after 01/01/00 | SI 01120.201 - .204 | |
| Only assets of third parties | SI 01120.200 |
NOTE: If at some later point in time, assets of the individual are added to a former third-party trust, the trust must be redeveloped under the instructions in SI 01120.201 - .204.
Consult Regional SSA Instructions
Consult any regional instructions that pertain to trusts to see if there are any State laws governing revocability or irrevocability, grantor trusts or other State law issues to consider. Many issues can be resolved over the phone. If necessary, they will tell you to refer the document with any relevant information or statements to your Assistant Regional Commissioner, Management and Operations Support (ARC, MOS) for possible referral to the Regional Counsel.
Many states have their own additional sets of criteria that they utilize to evaluate SSI eligibility when special needs or supplemental needs trusts are also presented. These state guidelines often impose more stringent guidelines than federal SSA regulations.
Now for the good news! The SSA regulations still allow special needs or supplemental needs trusts established with the assets of third parties not be considered a resource for SSI eligibility purposes. This means that parents, grandparents, or relatives can set up funding for the lifetime care of their disabled relative, without required payback provisions. Again, many states have their own requirements that payback provisions be added onto all trusts, and that the state be paid back after the death of the disabled individual for the cost of all benefits provided, regardless of the changes in the SSI regulations.
Laws and regulations relating to disabilities and eligibility for government benefits are complex and subject to change, both in their language and in administrative interpretation and application. You should consult with an attorney who is well versed in the area to determine how any of the information discussed above applies to your personal situation.
Information and Support for the Special Needs Community. Click on the link below to review our bi-monthly newsletter in pdf format.
In the Public Eye: Prenatal Testing for Down Syndrome - March/April 2009
Realizing Your Child's Potential - January/February 2009
Planning for your child with special needs requires extensive research to compile an enormous amount of information relevant to your child's well-being. You may need up to date medical, educational, financial, and legal information on recent changes in the law. MetLife is here to provide you and your family with assistance addressing the concerns that are unique to your family's situation.
However, we realize that your needs may extend beyond the scope of our areas of expertise. MetLife has provided the following links we hope will be helpful to you in your search for additional information and support resources.
Abledata - The National Institute on Disability and Rehabilitation
www.abledata.com
Autism Society of America
www.autism-society.org
The Exceptional Parent Magazine
www.eparent.com
Family Village - Global Community for families with members who have disabilities
www.familyvillage.wisc.edu
HDSA - Huntigton's Disease Society of America
www.hdsa.org
L.A. Goal
www.lagoal.org
Learning Opportunities for Individuals with Special Challenges
www.devereuxpocono.org
Manny's Caring Hands
http://www.mannys-caringhands.org
NAMI - National Alliance on Mental Illness
www.nami.org
National Fragile X Foundation
http://nfxf.org
NICHCY – National Dissemination Center for Children with Disabilities
http://www.nichcy.org/Pages/Home.aspx
NICHCY- Parenting a Child with Special Needs
http://www.nichcy.org/pubs/newsdig/nd20txt.htm
NICHCY - Services for Adults with Disabilities
http://www.nichcy.org/FamiliesAndCommunity/Pages/servicesadults.aspx
Special Needs Alliance
http://www.specialneedsalliance.com/
Special Needs Planners
http://www.specialneedsplanners.com/
MetDESK® has working relationships with leading advocacy organizations throughout the country: Autism Society of America; the Arc, NORD (National Organization for Rare Disorders); and National Down Syndrome Society, United Cerebral Palsyand our latest partnership is with the Huntington’s Disease Society of America. Find out more about the dynamics of these relationships and how they benefit all.
* MetDESK® Forms Relationships with Leading Advocacy Organizations
~MetLife’s Division of Estate Planning for Special Kids to provide support and planning services to nationally recognized groups~
MetDESK, MetLife’s Division of Estate Planning for Special Kids, is proud of its working relationship with the leading advocacy groups: Autism Society of America; The Arc, the country’s largest volunteer-based organization devoted to issues affecting people with mental retardation and related developmental disabilities; NORD (National Organization for Rare Disorders); National Down Syndrome Society, United Cerebral Palsy and Huntington’s Disease Society of America.
MetDESK focuses on the concerns of families with children and other dependents with special needs through a dedicated, nationwide network of MetLife Financial Services specialists who provide customized financial solutions to meet families’ needs.
MetDESK's relationships with the advocacy organizations are designed to provide members with easy access to special needs financial and estate planning information to help protect their rights and to educate them on issues facing the special needs community.
The Autism Society of America is the oldest and largest grassroots organization within the autism community, with more than 200 chapters and serving over 20,000 individuals, families, professionals, and agencies. It is a leading source of education, information and referral about autism and has been the leader in advocacy and legislative initiatives for more than three decades. To learn more about the organization, visit its Web site at www.autism-society.org
The Arc of the United States works to ensure that the over 7 million children and adults with mental retardation and related disabilities have the services and support they need to grow, develop and live in communities across the country. The Arc has over 140,000 members within approximately 1,000 state and local chapters nationwide. Information on how to support The Arc of the United States can be found at the organization’s Web site at www.thearc.org.
The National Down Syndrome Society (NDSS), the largest non-governmental supporter of Down syndrome research in the U.S., works to increase public awareness about Down syndrome and discover its underlying causes through research, education and advocacy. Information on how to support NDSS can be found on the organization’s Web site at www.ndss.org
NORD serves more than 25 million Americans affected by over 6,000 rare disorders. NORD provides patients and their families with easy to understand disease reports, peer networking, resource referrals, medication assistance program, technical assistance to new and established support groups, scientific research, and advocacy on legislative matters. Additional information on NORD can be found on the organization’s Web site at www.rarediseases.org
United Cerebral Palsy (UCP) is the leading source of information on Cerebral Palsy and is a pivotal advocate for the rights of persons with any disability. As one of the largest health charities in America, the UCP mission is to advance the independence, productivity and full citizenship of people with disabilities through an affiliate network www.ucp.org
The Huntington’s Disease Society of America, Inc. (HDSA) is a national non-profit voluntary health agency dedicated to finding a cure for Huntington’s Disease. They provide vital support, information and educational services to improve the lives of those affected by HD, offer resources and guidance for HD families through a national network of volunteer-based chapters and affiliates as well as through our HDSA Centers of Excellence for Family Services and promote and support research to find a cure for HD. www.hdsa.org
For more information about MetDESK, please call 1-877-MetDESK (1-877-638-3375).
* MetLife makes an annual contribution to these organizations.
Get Free Personalized Assistance
MetDESK specialists are helping families plan for the future of their children with special needs, to achieve not just lifetime care, but quality of life. To speak with a MetDESK specialist for free personalized assistance, click here.For More Information
For more information or to schedule a workshop for your organization, please call us at:
1-877-MetDESK
(1-877-638-3375)
Special Needs Calculator
This calculator can help you project the future expenses of an individual with special needs.
Start the calculator