Financial Planning

Take this quiz to see how well you have planned for your family's future:

1. Do you or your spouse/partner have a vision of how your child with a disability will live after you’re gone?
2. Have you identified a guardian, conservator, or trustee for your child?
3. Do you have a complete understanding of Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) government benefits?
4. Have you begun setting aside money for your child with special needs?
5. Do you have a written Letter of Intent?
6. Are any children, whether they have a disability or not, being excluded in your will?
7. Do you have a special needs or supplementary needs trust established to preserve government benefits?
8. Have provisions been made to fund these trusts with assets or insurance?
9. Have you coordinated your special needs planning with other relatives?
10. Have you done everything possible to protect your child’s financial future?
11. Have you planned where your special needs child will live if you are not around?
12. Will your child be able to earn enough to care for himself or herself? 
13. 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:

1. 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.

2. 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.

3. 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.

4. 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.

5. 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:

1. He or she has a physical or mental impairment that substantially limits one or more of his/her major life activities;
2. He or she has a record of such an impairment
3. 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

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
Recognizing Some Key Medical Tax Deductions for Parents of Children with Special Needs - November/December 2008

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.