| Benefits, Assets and Life Planning |
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Benefits, Assets and Life Planning and Down Syndrome
Rapid advances in clinical treatment and greater medical attention to people with Down syndrome during the 20th century have increased the life expectancy of these individuals. As many adults with this genetic condition live into their 50s, 60s and beyond, this new longevity needs to be incorporated into lifetime planning when a child is born. The law assumes that people over the age of 18 are competent to manage their own affairs regardless of disabilities, and parents are no longer considered legal guardians after this point. If protective provisions are not in place, the courts will make important decisions. Physical, social, financial and legal issues must be considered, as well as siblings and service agencies. A well thought out life plan is essential for long-term quality life for your loved one with Down syndrome. The consequences of not planning are too great to ignore.
Why is it important to begin life planning early in my child’s life?
People with special needs will typically survive their parents. If families do not put their wishes for their loved one in writing early on or fail to make provisions for future care, supervision and security, these decisions will be made by government agencies, the state and the courts. Family conflicts may arise over what is best for the individual. The only way for parents to be assured that their wishes will be carried out and their child will be secure is to prepare a life plan.
What will happen if you don’t plan?
No Wills – No Special Needs Trust – No Letter of Intent
No Government Benefit Planning – No Budgeting
The Good News – The government has a plan for you.
The Bad News – The government has a plan for you.
Where are you today in the planning process?
What are the key issues to address in planning for the future?
Lifestyle issues, which include consideration of the preferences of the person and their day-to-day care needs; legal issues, which include wills, trusts, guardianship and trustees; financial issues, which include creating a budget and providing funds to support it; and government benefits, which may include Social Security, Medicare, Medicaid and military pensions are all important to address.
When should families begin this process?
As soon as possible. Regardless of whether the person with a disability is four months old or forty years old, planning is necessary.
Can any attorney, financial advisor, accountant or other professional do this work?
No. Few professionals have any experience in this field. It is important to work with someone who specializes in Special Needs Planning. Using traditional estate planning techniques for a family with a loved one with special needs will likely result in the loss of as much as $1,000,000 in lifetime government cash benefits, unlimited medical care, and the government taking assets left in your loved one’s name. Unfortunately, these situations happen frequently.
What is Supplemental Security Income and how does one qualify?
Supplemental Security Income (SSI) is a federal benefit available to children with eligible disabilities (Down syndrome constitutes automatic disability eligibility) who are under age 18 (or under age 22 for a student regularly attending school). Regardless of disability status, the family must also have limited income and resources. Upon reaching age 18 eligibility lapses due to age, a person may qualify as an adult if the disability began prior to age 22 (again, Down syndrome always satisfies this requirement), and the individual’s income and assets are below a certain amount. A child’s eligibility may change when reapplying as an adult. In 2008, the person may not have more than $2,000 of total assets. The person may be employed, however, there are income caps and Social Security benefits are integrated with earned income.
Can I take assets out of my child’s name in order for them to qualify for government benefits?
There are certain ways of doing this. Simply taking them out of your loved one’s name and giving it to someone else will result in the loss of Medicaid for up to 5 years. There are specific methods of transferring assets from the person’s name that will meet the compliance requirements of Social Security and Medicaid allowing the person to continue to use those assets and remain eligible for government benefits.
Are there other Social Security benefits available?
In addition to SSI, Social Security Survivor Benefits (SSA) and Social Security Disability Income (SSDI) are also available to qualifying individuals. Medicare is also available to qualified individuals. You may call Social Security at (800) 772-1213 (TTY: 800-325-0778) or visit their Web site at: www.ssa.gov for more information.
What is the best method of leaving assets for the care of a person with special needs?
The best method is a Special Needs Trust. Family and friends should not name the person as a beneficiary in their wills, life insurance, annuities or pension plans. The person with special needs should be left no assets in his or her name. Anything intended for the person should be left to a special needs trust. The person with special needs should be specifically excluded from receiving any distributions from a will or trust. In addition, they cannot have any authority under any provision of the will or trust.
What is a special needs trust?
A special needs trust is a legal document that enables family and friends to leave assets to provide for the person with a disability. When properly drafted, the funding assets are not considered to belong to the person, but are placed in the trust to provide for their supplemental needs. This will avoid the termination and/or reduction of government benefits and, for individuals on Medicaid, will prevent the loss of these assets to repay Medicaid for previously provided health care services.
You need not have a large estate to benefit from a special needs trust. Assets in excess of $2,000 in the person’s name can result in termination of some benefits or be used to repay Medicaid.
There are different types of Special Needs Trusts to fit various needs and situations. Be sure that you understand the difference and have the correct one prepared for your loved one.
What is the economic effect of SSI and Medicaid?
A person beginning SSI today at age 18 and living a typical life expectancy to age 80 will receive over $1,000,000 in cash benefits and unlimited medical care. These benefits will be reduced or lost without proper planning.
Is there any private health insurance available to a person with special needs?
Children with special needs can remain as a covered dependent on their parents’ employer sponsored group medical plans after they leave public school and exceed the minimum age requirement. Private insurance is always primary over Medicaid and Medicare.
Is there any risk in leaving assets to other family members designated to provide for the person with a disability? Yes, even though you trust others to use your assets to provide for your loved one, problems can arise that they may have no control over. If assets are left to another person, those assets legally belong to them. The assets may be lost due to lawsuits, creditors, divorce or the death of the holder of the funds. Instead, this individual can be named trustee of the special needs trust. This will protect the assets for the person with Down syndrome.
What is the best way to leave information for the person’s care when I am no longer here to provide it?
A detailed document known as a “Letter of Intent” is recommended. While this letter is not a legal document, it includes details about the person’s day-today care needs, their abilities, diet, activities, rights, medical care, etc. It is recommended that you make a video providing instructions and showing care providers how to assist the person with special needs in performing the typical activities of daily living, such as bathing, dressing, food preparation and communication.
Do parents automatically retain the same legal authority on behalf of their child after he or she reaches age 18?
No. At 18, your child is an “emancipated adult” under the law. To retain legal authority, you must first decide if legal guardianship is appropriate. If so, you need to petition the courts in the state that the person with special needs resides in. As laws vary between states, you should consult legal counsel specializing in guardianship.
If guardianship is not necessary or appropriate for the person with special needs, another option is durable medical and legal power of attorney. This is a legal document that authorizes someone to make decisions on behalf of the person with special needs when he or she is unable to. The person granting the power of attorney (in this case the person with special needs) does not relinquish any rights. The person with special needs must be competent to understand and sign the document. They may also change it or cancel it at any time.
What is a guardian?
Guardians are appointed by the courts to serve in a number of specific ways on behalf of a minor child or an adult who is considered incapable of managing certain necessary functions for themselves. If the parents of a child with special needs want to continue as the legal guardians after their child is age 18, they must petition the courts to be appointed. If lifetime guardianship is needed, consider giving the last surviving guardian the authority to appoint his or her successor. The person with special needs could survive all those listed. If there are no remaining appointed guardians, the state will appoint a successor.
Guardianship is a court-ordered mandate by which an individual or institution is appointed to: (A) manage the estate of the person judged incapable of caring for his or her own affairs; (B) be responsible for the care and decisions made on behalf of a person when he is determined to be unable to care for himself. A conservator/guardian can be appointed to serve in one or both of these ways. In some states guardians assist the person and conservators assist the estate of the person.
What is a trustee?
A trustee is the person who manages the trust. There may be more than one trustee. Trustees have fiduciary responsibility for seeing that the funds are properly invested and disbursed according to the wishes of the trustor and the laws of the state. The guardian and initial trustee may be the same person.
Who can I choose to serve as a guardian or trustee?
Anyone who can be trusted to fulfill your wishes and provide the best care and attention for your loved one is a good choice to be a guardian or trustee. While the trustee has the responsibility of investing and disbursing trust funds for the benefit of the person with special needs, if they do not have the expertise, they can hire professional advisors. Another option is to appoint a financial institution to serve as trustee or co-trustee with a family member. Do not appoint a corporate trustee without meeting with their representatives first.
Does life planning provide any benefits to the parents now or only after they are no longer here?
Life planning is important for today, tomorrow and the future. By creating a living special needs trust, families can begin funding their plan immediately and provide a place to put assets for the person’s future. The letter of intent should be given to the person’s teachers, doctors, therapists, employers and anyone else actively involved in the individual’s life as both an instructive piece and for the professionals’ input as well.
Is it important to include grandparents and other family members in the planning process?
Yes, it is critically important. If grandparents leave assets to a child that does not survive them, it typically goes to that child’s children. If one of these children has special needs, the grandparents assets could result in the loss of benefits and the government taking all or part of the inheritance as a payback.
Special thanks to Bart Stevens for preparing this information for the National Down Syndrome Society. Mr. Stevens can be reached through www.BSSNP.com.
BENEFITS AVAILABLE TO PEOPLE WITH DOWN SYNDROME
The purpose of this section is to provide a summary of benefits available to people with Down syndrome, and to educate families about lesser known legal provisions concerning these benefits. It is not intended as legal advice, or to replace the need for an attorney, but as a starting point for seeking information about available benefits. If you have any questions about this white paper, or about benefits to which you or your friend or relative may be entitled, please contact NDSS at 1-800-221-4602 or
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SUPPLEMENTAL SECURITY INCOME
Supplemental Security Income (“SSI”) is a federal program that assists aged, blind, and disabled people, including those with Down syndrome, who have little or no income, by means of income payments.
Qualifying for SSI—Adults
1. Disability threshold—“substantial gainful activity”
In order to initially qualify for SSI, adults must have a disability that
2. Resource threshold—$2,000 for single persons, $3,000 per couple
The second hurdle is that a person applying for SSI cannot have more than $2,000 in resources ($3,000 for a married couple). This is perhaps one of the hardest hurdles for an applicant to overcome. While a full list of what is and is not considered a resource is contained in Appendix A, be aware that many assets—including most cash, bank accounts, stocks, bonds, vehicles, and personal property—can be considered resources. Make your family aware of this fact—bonds purchased for the birthday boy or girl by well-meaning relatives may affect that person’s ability later in life to qualify for SSI. Similarly, even small inheritances left to those receiving SSI can place them over the resources limit.
3. Citizenship and residency
In order to qualify for SSI, a person generally must be a U.S. citizen or national. Certain aliens can qualify for SSI; information concerning what specific aliens may qualify for SSI is contained in Appendix B. The applicant must also be a resident of one of the fifty states, the District of Columbia, or the Northern Mariana Islands. Also, he or she cannot be absent from the United States for a full calendar month, or 30 consecutive days.
4. Applying for other programs
A person must also apply for any other available benefits, such as Social Security.
Qualifying for SSI—Children
1. Disability threshold
Like adults, children cannot make more than the “substantial gainful activity” limit, $900 per month in 2007. Other than that threshold, Down syndrome has been recognized as an SSI-qualifying disability.
2. Resource threshold
As with adults, the child cannot have $2000 in assets. But this process does not only count the child’s assets: the Social Security Administration will “deem” that the first $2000 of single parents’ resources, or the first $3000 for married parents, is available to the child. Therefore, even if the child has no assets, a single parent with more than $2,000 in assets (described in more detail above and in Appendix A) cannot successfully apply for SSI for his or her child.
3. Citizenship and residency
In order to qualify for SSI, a person generally must be a U.S. citizen or national. Certain aliens can qualify for SSI; this information is contained in Appendix B. The applicant must also be a resident of one of the fifty states, the District of Columbia, or the Northern Mariana Islands. Also, he or she cannot be absent from the United States for a full calendar month or 30 consecutive days, although there is an exception for children living with military parents who are stationed overseas.
4. Applying for other programs
A person must also apply for other benefits that are available to the person, such as Social Security.
5. Income threshold
SSI for children is only available if the gross monthly income of the parent(s) is below a certain threshold. One example of this threshold is the “Deeming Eligibility Chart for Children” on the following page. (This is the 2006 chart; the 2007 chart is not publicly unavailable.)
Note that this chart may NOT apply in many circumstances, and is only given here as an example of the levels of parental gross monthly income considered. This chart will not apply when:
Earned Income is wages, earnings from self–employment, royalties, etc.
Unearned Income is all income that is not earned, such as Social Security benefits, pensions, State disability payments, unemployment benefits, interest income, and cash from friends and relatives.
Applying for SSI
1. How to apply
You cannot simply fill out the appropriate forms and send them to the Social Security Administration in order to apply for SSI. You must meet with a Social Security representative, either by phone or in person. While you could visit the local office without an appointment, calling to schedule an appointment is recommended. The applicant’s benefits will not be penalized by calling to schedule an appointment—if you apply for benefits within 60 days of calling to make an appointment, the day of the call will be used as the application filing date.
The national toll-free number to schedule an appointment is 1-800-772-1213. You may also call your local Social Security office, which may be found by using the Social Security Office Locator at https://s044a90.ssa.gov/apps6z/FOLO/fo001.jsp.
Apply or call to schedule an appointment as soon as possible. The applicant cannot receive benefits for times earlier than the application date. There are no application fees.
2. The application process generally
A claims representative will interview the applicant either over the phone or in person, and will use a computer to complete the forms based on your responses. The applicant will also need to submit documents to prove eligibility. The following are examples of documents that the representative may need. Do not decide not to apply for SSI simply because the applicant does not have any or all of the below documents—the claims representative will help the applicant procure any necessary documentation.
If the applicant does not have any necessary documents, the representative will help get them.
Do not forget: Always keep a copy of any documents or letters that you send to the Social Security Administration. Keep track of the dates you send information or talk with personnel, as well as the name of the Social Security employee with whom you spoke.
3. Using a representative
The applicant has the right to appoint a representative who can help with the SSI claim, schedule the appointment, and accompany the applicant to the appointment as well as any interview, meeting or hearing with the Social Security Administration.
The applicant can choose one or more attorneys or other qualified persons as representatives. In fact, applicants are represented in about 70% of cases. If you cannot find a representative, your local Social Security office should have a list of organizations that can help you find one. Also, if you select a representative, you must inform the Social Security office via a Form SSA-1696, Appointment of Representative, which is available at the local office or at http://www.ssa.gov/online/ssa-1696.html.
If your representative is going to charge you a fee for services, he or she must first obtain permission from the Administration through either a fee agreement or a fee petition.
a. Fee agreements
b. Fee petition
c. Payment of fees
4. How long will it be before benefits start?
Decisions usually take 3-4 months from the date of application.
BUT the Social Security Administration may make a “presumptive disability determination” if you are applying for SSI on the basis of Down syndrome. If it does so, it may begin immediate payments for six months while the Disability Determination Service makes the final determination about benefits. (Note: the local Social Security office does not make the disability determination. The determination is made by the Disability Determination Service, an agency in your state.)
If you are due benefits (starting only after the time of application), but they are delayed or have not been received:
In 2007, the maximum federal SSI benefit is $623 for an individual, $934 for a couple.
Many states supplement the maximum federal SSI benefit. Some states administer the additional payments themselves; in other states, the Social Security Administration administers the additional payments.
States where the Social Security Administration administers the supplements:
*In this state, the SSA or the state may administer supplements depending on the living arrangements.
States where the state government administers the supplements:
*In this state, the SSA or the state may administer supplements depending on the living arrangements.
Your Social Security claims representative will help you coordinate any contacts with your state as necessary to receive supplemental payments. For more information on the maximum supplemental payments for each particular state, please visit http://www.socialsecurity.gov/policy/docs/progdesc/ssi_st_asst/2006/index.html or http://www.workworld.org/wwwebhelp/ssi_state_supplements_overview.htm.
Appeals
Everyone has the right to appeal any “initial determination.” An initial determination can be: a ruling as to whether an applicant is eligible for SSI; a determination as to how much SSI a person should receive; a notice that a person has been overpaid; a Continuing Disability Review or other ruling that a person is not disabled; or a redetermination ruling that due to a person’s changed status in income, resources, or living arrangements, the SSI amount should be reduced
You must request an appeal within 60 days of receiving a notice letting you know about an initial determination. If you do not do so, you lose your right to appeal.
If you wish to appeal an initial determination, however, you should do so as soon as possible: if you appeal within 10 days of getting a notice, SSI benefits can continue at the same amount while the case is pending
Reconsideration
The first step in the appeals process is called reconsideration. You can start reconsideration either by writing a letter to the Administration or by filling out the proper form:
As always, your representative can help you and fully participate in this process.
After you fill out the form for reconsideration and send it in, the Social Security office may contact you for more information, and then will determine whether to grant your reconsideration.
Hearing
If you disagree with the reconsideration determination, you or your representative can request a hearing before an Administrative Law Judge by writing a letter to the Administration, or filling out form HA-501, available at http://www.ssa.gov/online/ha-501.html. You must do this within 60 days after you get the notice of reconsideration.
You do not have to appear at a hearing before a judge, but it is in your best interest to do so to argue your case (or so your representative can argue your case). If you not wish to appear, you must notify the judge that you wish your case to be decided on your file alone. If, however, you would like to appear but then find out you cannot make it, notify the judge as soon as possible so you do not lose your appeal rights.
The Administration will pay for travel costs if your home is more than 75 miles (one way) to the hearing. Be sure to tell the judge as soon as possible if travel costs will be an issue.
The hearing is informal. You can present witnesses and ask them questions. The judge can also ask them (and you) questions. You can also present additional documents. The judge may also decide that she wishes to have other witnesses, such as doctors. The hearing is recorded, and you have the right to ask for a copy of the recording.
The judge will send you and your representative a copy of the hearing decision.
Appeals Council
If you disagree with the judge’s decision, you can appeal by writing to the Administration and requesting an Appeals Council review, or by completing form HA-520, available at http://www.ssa.gov/online/ha-520.html. You must do this within 60 days of receiving the judge’s decision. You and your representative can submit new evidence to the Appeals Council. The Appeals Council will send you and your representative a copy of the hearing decision.
Federal Court
If you disagree with the action of the Appeals Council, you may appeal to the U.S. District Court in your area. (You can find your U.S. District Court at http://pacer.psc.uscourts.gov/psco/cgi-bin/district.pl, and links to specific courts at http://www.findlaw.com/10fedgov/judicial/district_courts.html.) You must file your case with the court within 60 days of receiving the Appeals Council’s decision.
Once a Person is Receiving SSI
The Social Security Administration will periodically conduct a Continuing Disability Review. This is simply a medical review to ensure that the person receiving benefits still has a disability, and it is conducted every few years.
And even though it is technically called a “redetermination,” (see below), the Administration also conducts a medical review one month before a child turns 18 years of age to ensure that the child will still have a medical disability as an adult, and can receive SSI as an adult.
The Social Security Administrations conducts redeterminations more frequently than CDRs. Redeterminations are reviews of the beneficiary’s income, resources, and living arrangements to make sure that the beneficiary is getting the right amount of SSI benefits. A redetermination may be conducted within three months after benefits are awarded, and then every 1-6 years thereafter or when a beneficiary reports a change in status (for example, marriage, or changing living arrangements).
Redeterminations may be conducted:
In all cases, you have 30 days either to respond to the appointment letter or complete and return any forms. If you do not respond, SSI payments may be reduced or stopped altogether.
A beneficiary must report any of the following changes to the Social Security Administration as soon as possible, and no later than 10 days after the end of the month in which the change occurred:
If the beneficiary fails to report these items, he or she may be underpaid, or overpaid and have to pay the government back. The Administration may reduce a SSI benefit by $25 to $100 for each time a person fails to report a change later than 10 days after the end of the month in which the change occurred.
From time to time, the beneficiary may receive a notice or letter from the Social Security Administration. Do not ignore this notice or any notice or letter sent by the Social Security Administration. The heading of the notice may state “notice of change in payment” or something similar, and be signed by a Social Security official. If you receive a notice, read it in full. If you disagree with the determination made or action announced in the notice, then you may appeal the determination (see “Appeals,” above). Again, ignoring the notice may result in a loss of benefits and/or the right to appeal.
The Administration tries to ensure that beneficiaries are paid at the proper amount. If the Administration believes that it has paid someone more SSI than he or she is due, it will send a notice explaining the overpayment and asking for a full refund within 30 days. If you are currently getting checks and cannot make a full refund, the notice may propose to withhold the overpayment at the rate of 10 percent of your total income, stating the month the proposed withholding will start. The notice should also fully explain your appeal rights, explain how to request to have the overpayment reviewed and waived, so you may not have to pay it back, and explain how you can appeal the decision.
The overpayment may be due to (or the Administration may believe that an overpayment is due to) a change in living situation, a change in marital status, a failure to report a change, an incorrect estimate of income or resources, or the Administration committing an error when figuring benefits.
If you believe you were not overpaid, you may request a reconsideration (see “Appeals,” above). The form to apply for a reconsideration is SSA-561-U2, available at http://www.ssa.gov/online/ssa-561.html. If you ask for an appeal within 10 days of the date on the notice, any payment the Administration is currently making will continue until a decision is made, so it is vital to ask for an appeal as soon as possible.
If you do agree that you were overpaid, but feel that the overpayment was not your fault and that you cannot pay it back, you can apply for a waiver so that you do not have to pay back the overpayment. This form to apply for a waiver, SSA-632, is available at http://www.ssa.gov/online/ssa-632.html. For example, if you did inform the Administration of a change in living status that, because of administrative error, it only discovers months later and declares it overpaid you in that time, you could claim the overpayment was not your fault and that you are currently unable to pay it back. You may have to submit bills to show that your monthly expenses use up all of your income and that it would be a hardship for you to repay. If your request for waiver is denied, you can also appeal (request a reconsideration of) that decision.
You can ask for both a reconsideration and a waiver. (That is, you can argue that you do not think you are overpaid, but that even if you were, it is not your fault and you cannot afford to pay it back.)
If the applicant loses benefits because he or she worked and had earnings more than the “substantial gainful activity” level, but then later (within five years) becomes eligible for SSI again because his or her earnings fall below that level, he or she can apply for Expedited Reinstatement. This process allows applicants to qualify for benefits beginning the next month after the request, and possibly get provisional benefits for six months before the payments are received—all without completing a new application.
Plans to Achieve Self-Support
One of the most underutilized federal programs for SSI recipients is the Plans to Achieve Self-Support (“PASS”) program. Less than one percent of all blind or disabled SSI recipients utilize this program, either because they do not know about it, or because of the difficult application process. Either way, anyone with Down syndrome receiving or applying for SSI should apply for PASS. Why? As mentioned previously, the caps on income and assets for SSI recipients is very low—a single person cannot have more than $2,000 in assets. But if a SSI recipient has a PASS plan, income saved or used in order to achieve a vocational goal is not counted toward SSI, with the end result that the person can have more assets and still qualify for SSI, and the SSI payment amounts may even increase. As a result, people with Down Syndrome receiving SSI should apply for a PASS plan to allow them to save more money to reach occupational goals.
There are only two conceivable downsides to a PASS plan. The first is that money saved in a PASS plan is not exempt from income calculation for Medicaid, so if a person saves too much, he or she may become ineligible for Medicaid.
The second, as previously mentioned, is that the application process is difficult. The individual must complete a 15-page form, available at http://www.socialsecurity.gov/disabilityresearch/wi/SSA-545.pdf. Fortunately, there are many organizations that can assist you with this form. The SSA lists experts in the PASS process, known as PASS Cadres, at http://www.socialsecurity.gov/disabilityresearch/wi/passcadre.htm. Phone numbers for PASS Cadres across the country are available there. The SSA also provides vocational rehabilitation providers in every state; they can help you prepare a PASS, and PASSes prepared by these providers are usually accepted: http://www.ssa.gov/work/ServiceProviders/rehabproviders.html.
Also, private organizations can help you complete the PASS application. An on-line tutorial, as well as other information, is available at http://www.passonline.org/. And many examples of successful PASS applications are available at http://www.passplan.org (one such plan is attached as Appendix C).
MEDICAID
Services Available Under Medicaid
By paying for medical assistance to those with limited resources, Medicaid is nothing short of a godsend for many families with children with Down syndrome, or adults with Down syndrome, who do not otherwise have health insurance. Unlike SSI, however, which is centrally run by the federal government through the Social Security Administration, each state has its own Medicaid program based on loose federal government guidelines. Some states, therefore, have different levels of eligibility and benefits than others. That being said, states must provide the following services to Medicaid recipients:
Many states also provide the following optional services:
Qualifying for Medicaid
In general, a person that qualifies for SSI will qualify for Medicaid. Also, many states have higher earning thresholds for certain Medicaid services, so that a person not qualified to receive SSI because she (or her parent(s)) exceeds the SSI earning cap can still receive state Medicaid benefits—even, in some states, with incomes over $40,000. A person should therefore not forego applying for Medicaid benefits simply because he or she did not qualify for SSI.
Applying for Medicaid
Each state has numerous locations where a person can apply for Medicaid. To locate a state Medicaid office, a person can go to http://www.cms.hhs.gov/apps/contacts/ and search for his or her State Department of Insurance, Medical Assistance Office, or Health Department. A prospective applicant can also call Medicare at 1-800-633-4227 to obtain an office location. Similarly, a person can call Social Security at 1-800-772-1213 or visit a local Social Security office (locations can be found at https://s044a90.ssa.gov/apps6z/FOLO/fo001.jsp. Like the process of applying for SSI, an applicant will eventually need to show proof of identity (such as with a birth certificate), proof of residency (lease, utility bills, etc.), proof of other medical insurance, and various financial documents. As with SSI, an applicant should not be deterred from applying simply because he or she may not have some or all of these documents.
SOCIAL SECURITY DISABILITY INSURANCE (“SSDI”) & MEDICARE
Social Security Disability Insurance (“SSDI”)
SSDI is a federal program that assisst disabled people, including those with Down syndrome, who have worked and earned wages for a certain amount of time, by means of disability payments. In order to qualify for SSDI, a person must (1) be disabled, (2) not engage in “substantial gainful activity” (i.e. as of 2007, not earn more than $900 per month), and (3) have earned enough “credits” to qualify. A person earns a “credit” for every calendar quarter in which they earned over the amount required by the Social Security Administration. For example, in 2007, a person must earn at least $1,000 in a calendar quarter to earn a credit. (This number changes every year; it was $970 per quarter in 2006.) Therefore, a person who earned $400 per month from January to June, 2007, would earn two credits, and could earn four credits if he worked for the entire year. In the same manner, a person making $300 per month would earn no credits in 2007—he or she would only earn $900 for each calendar quarter, less than the $1,000 requirement.
The number of credits needed to qualify for SSDI increases with a person’s age. A person 22.5 to 24 years old must have at least 6 credits earned in the previous three years. A person 24 to 31 years old must have credits for working at least half the time between age 21 and the time the person become disabled. For example, a 27-year old would need 12 credits (out of a possible 24 quarters from the time the person turned 21), and a 31-year old would need 20 credits (out of a possible 40 quarters from the time the person turned 21).
There is one exception to the “credits” rule. A disabled person can receive SSDI if his or her parent is deceased or receiving Social Security retirement or disability benefits. In those cases, the disabled person is considered an “SSDI disabled adult child” for benefit purposes, or DAC, and paid an SSDI amount based upon the parent’s status and the number of credits the parent earned—a DAC will receive 75% of the amount his or her deceased parent was to receive, or 50% of the amount his retired or disabled parent receives.
Be careful when applying for or receiving SSDI! SSDI payments are “unearned income” under SSI and may cause a person to become ineligible for SSI.
To apply for SSDI, a person can visit his or her local Social Security office (using this locate r: https://s044a90.ssa.gov/apps6z/FOLO/fo001.jsp), call 1-800-772-1213, or apply online at http://www.ssa.gov/applyfordisability/adult.htm.
The applicant will need various forms, such as the ones below. Again, do not let the lack of forms stop the applicant from applying—the SSA representatives will help him or her obtain any necessary forms.
If the SSDI claim is denied, then the applicant may appeal the decision within 60 days under the same process available to SSI applicants (see “Appeals,” above).
Medicare
Although Medicare is primarily for people 65 and older, a person of any age becomes eligible for Medicare Parts A (hospital insurance) and B (medical insurance) once he or she has received SSDI benefits for 24 consecutive months. If a person has received SSDI for 24 consecutive months, and has not received a Medicare card or notification of Medicare enrollment, he or she should visit his or her local Social Security office (using this locator: https://s044a90.ssa.gov/apps6z/FOLO/fo001.jsp) or call 1-800-772-1213.
APPENDIX A
Items counted as Resources for the $2000 single/$3000 married couple limit
Cash
Bank accounts
Stocks
U.S. savings bonds
Land (except for the land on which your residence is located)
Vehicles, except for one vehicle used for personal transportation
Personal Property not essential for self-support
Life Insurance valued more than $1,500
Anything else owned that could be liquidated/converted to cash and used for food or shelter
Items NOT counted as Resources for the $2000 single/$3000 married couple limit
The home a person lives in and the land it is on
Household goods and personal effects
Wedding and engagement rings
Burial spaces for the person or his/her immediate family
Burial funds for the person and his/her spouse, each valued at $1,500 or less
Life insurance policies with a combined face value of $1,500 or less
One vehicle, regardless of value, if used for transportation for the person or a member of the person’s household
Retroactive SSI or Social Security benefits for up to 9 months after received
Grants, scholarships, fellowships, or gifts set aside to pay educational expenses for 9 months after receipt.
APPENDIX B – QUALIFIED ALIENS FOR SSI
An SSI applicant can be a “qualified alien” if one of the following applies:
APPENDIX C – PASS PLAN APPLICATION SAMPLE
Plan for Achieving Self-Support
Name: Kris
Part I - Your Goal
How much do you expect to earn each month (gross) after your plan is completed? $480.00/month
How do you expect to find a job by the time your plan is completed? This plan is based on a part time position operating the riveting I have already negotiated with XYZ Manufacturing. I will be utilizing both Community Services Agency and Anystate State Department of Developmental Disabilities for maintaining the position outlined in this PASS.
Part II - Medical/Vocational/Educational Background
How long?
Job Type did you work?
I have worked for a restaurant rolling silverware. 3 years
If you completed college, list your major and degree(s) attained; if you completed one or more courses in a trade or vocational school, list the trade(s) you learned: N/A
If yes, show the name, address and phone number of the person or organization who conducted the evaluation: N/A
If yes, please answer the following:
When was your prior plan approved (month/year)? N/A
When did it end (month/year)? N/A
What was your goal in the prior plan? N/A
Why did your prior plan not enable you to become self-supporting? N/A
Why do you believe that this plan will be successful? This plan utilizes my proven good hand-eye coordination and fine motor skills, and my negotiated agreement for employment at XYZ Manufacturing.
Do you want us to contact the person who is helping you if we need additional information about your plan? [ X] Yes [] No
Do you want us to send a copy of our decision on your plan to the person who is helping you? [ X] Yes [] No
Part III - Your Plan
List the steps, in sequence, that you will take to reach the goal and show the dates you expect to begin and complete each step. Be sure to show when you expect to purchase the items or services listed in Part IV.
Approached XYZ Manufacturing and negotiated employment agreement running a rivet machine based on my agreement to purchase a Hudson Riveter 19M, in exchange for employment. Position is being created for me. From 10/98 to 12/98.
Develop and submit this PASS with CS Agency, coordinating with Division of DDD Services. From 1/99 to 2/99.
Set up PASS checking account with personal savings. From 1/99 to 2/99.
Apply and receive Anystate VR Services. From 2/99 to 4/99.
PASS reviewed and approved by SSA. From 2/99 to 3/99.
Receive PASS fund retroactive to SSI application and PASS submission. From 2/1/99 to 3/99.
My parents have agreed to authorize loan co-signatures and assist with securing the loan to purchase the riveter. From 3/99 to 4/99.
Purchase the machine. From 3/99 to 4/99. Begin employment at Manufacturing Inc. with Anystate Vocational Rehabilitation paying for job coaching per the following schedule based on 20 hours per week worked:
1st week........................90% coaching = 18hours
2nd-4th week.................60% coaching = 36hours
2nd month.....................30% coaching = 24hours
3rd month......................20% coaching = 16hours. From 4/99 to 7/99.
4th-6th month.................5% coaching = 30 hours. From 8/99 to 10/99.
PASS achieved goal of working 80hours per month with reduction of job coaching from 90% - 5% in six months. Completed 10/99. Making payments for equipment while maintaining employment with job coaching services of only 5%/month. From 4/99 to 4/04.
Part IV - Plan Expenditures and Disbursements
Item/service: Rivetor 19M Cost: $15,000
Vendor/provider: National machinery company Why needed: Ownership of this equipment will create a single purpose job at a local bindery, specifically developed for my skills and provide for long term employment security. How will you pay for this item (e.g., one-time payment, monthly payment) ? monthly How did you determine the cost? Cost of the machine and interest for loan purchase. Item/service: Job Coaching Services Costs: $3,290 Vendor/provider: Community Services Agency
Why needed: To support my work skills development through a supported employment
methodology designed to fade supports from the initial 90% coaching to 5% coaching over 60 months.
How will you pay for this item (e.g., one-time payment, monthly payment)? monthly
How did you determine the cost? Contracted State VR rate of $35.00/hour, less hours paid directly by the Division of Developmental Disabilities.
Do you currently have a valid driver's license? [ X ] Yes [] No
If no, Part III must include the steps necessary to attain a driver's license. Explain why alternate forms of transportation (e.g., public transportation, cabs, having friends or relatives drive you) will not allow you to reach your goal? N/A
If you are proposing to purchase a vehicle, explain why renting or leasing are not sufficient. N/A
If you are proposing to purchase a new vehicle, explain why purchasing a reliable used vehicle is not sufficient. N/A
Explain why you chose the particular vehicle rather than a less expensive model. N/A
Part V - Income/Resource Exclusion
If yes, explain how you will keep the money separate from other money you have. (If you will keep the savings in a separate bank account, give the name and address of the bank and the account number.): I will establish a PASS account while this PASS is being approved and send SSI the account number.
Part VI - Remarks
Thank you for your time and support in processing and approving my PASS. I will work hard to achieve my stated goals. My intention is to achieve 20hours per week (or more) employment and to reduce my job coaching from 90% to 5% in 60 months. Please see attached offer of employment from XYZ Manufacturing supporting my employment as outlined in this PASS. This employment opportunity will allow me to increase my marketability through work experience in a specialized industry, as well as increase my earning potential.
Part VII - Agreement
If my plan is approved, I agree to:
I realize that if I do not comply with the terms of the plan or if I use the Income or resources set aside under my plan for any other purpose, SSA will count the income or resources that were excluded and I may have to repay the additional SSI I received. I also realize that SSA may not approve any expenditures for which I do not submit receipts or other proof of payment.
I know that anyone who makes or causes to be made a false statement or representation of material fact in an application for use in determining a right to payment under the Social Security Act commits a crime punishable under Federal Law and/or State Law. I affirm that all the information I have given on this form is true.
Signature _________________ Date___________________
Privacy Act Statement
The Social Security Administration is allowed to collect the information on this form under section 1631 (e) of the Social Security Act. We need this information to determine if we can approve you plan for achieving self-support. Giving us this information is voluntary. However, without it, we may not be able to approve you plan. Social Security will not use the information for any other purpose.
We would give out the facts on this form without your consent only in certain situations. For example, we give out this information if a Federal law requires us to or if your Congressional Representative or Senator needs the information to answer questions you ask them.
The Paperwork Reduction Act of 1995 requires us to notify you that this information collection is in accordance with the clearance requirements of section 3507 of the Paperwork Reduction Act of 1995. We may not conduct or sponsor, and you are not required to respond to, a collection of information unless it displays a valid OMB control number.
TIME IT TAKES TO COMPLETE THIS FORM
We estimate that it will take you about 45 minutes to complete this form. This includes the time it will take to read the instructions, gather the necessary facts and fill out the form. If you have comments or suggestions on this estimate, write to the Social Security Administration, ATTN: Reports Clearance Officer, 1-A-21 Operations Bldg., Baltimore, MD 21235. Send only comments relating to our "time it takes" estimate to the office listed above. All requests for Social Security cards and other claims-related information should be sent to your local Social Security office, whose address is listed under Social Security Administration in the U.S. Government section of your telephone directory.
RECEIPT FOR YOUR PLAN FOR ACHIEVING SELF-SUPPORT
We received the plan for achieving self-support which you submitted. We will process your plan as soon as possible.
You should hear from us within _______ days. We will send you a letter telling you if your plan is approved. We will notify you if we need additional information before making a decision on your plan. We may ask you to modify your plan.
YOUR REPORTING AND RECORD KEEPING RESPONSIBILITIES
If we approve your plan, you must tell Social Security about any changes to your plan. You must tell us if:
You must tell us about any of these things within 10 days following the month in which it happens. If you do not report any of these things, we may stop your plan.
You should also tell us if you decide that you need to pay for other expenses not listed in you plan in order to reach your goal. We may be able to modify your plan or change the amount of income we exclude so you can pay for the additional expenses.
YOU MUST KEEP RECEIPTS OR CANCELLED CHECKS TO SHOW WHAT EXPENSES YOU PAID FOR AS PART OF THE PLAN. You need to keep these receipts or cancelled checks until we contact you to find out if you are still following your plan. When we contact you, we will ask to see the receipts or cancelled checks. If you are not following the plan, you may have to pay back the some or all of the SSI you received.
Life Planning Resource List
Organizations
Access to Respite Care and Help (ARCH)
The Chapel Hill Training-Outreach Project
800 Eastowne Drive
Chapel Hill, NC 27514
Telephone: (800) 473-1727 or (800) 773-5433
Website: http://chtop.org/ARCH.html
Alzheimer’s Association (National Office)
225 North Michigan Avenue, Fl. 17
Chicago, IL 60601-7633
Telephone: (800) 272-3900 (24 hour hotline)
Website: http://www.alz.org
The Arc of the United States
1010 Wayne Avenue, Suite 650
ilver Spring, MD 20910
Telephone: (301) 565-3842 or (800) 433-5255
Fax: (301) 565-3843 or (301) 565-5342
E-mail:
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Website: http://www.thearc.org
Association of University Centers on Disabilities (AUCD)
1010 Wayne Ave.
Suite 920
Silver Spring, MD 20910
Telephone: (301) 588-8252
Fax: (301) 588-2842
Email:
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Website: http://www.aauap.org
Center for Independent Living
2539 Telegraph Avenue
Berkeley, CA 94704
Telephone: (510) 841-4776 or (510) 848-3101
Fax: (510) 841-6168
E-mail:
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Website: http://www.cilberkeley.org
Disabled and Alone, Life Services for the Handicapped, Inc.
61 Broadway, Suite 510
New York, NY 10006
Telephone: (212) 532-6740 or (800) 995-0066
E-mail:
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Website: http://www.disabledandalone.org
Estate Planning for Persons with Disabilities
1200 Corporate Drive, Suite 330
Birmingham, AL 35242
Telephone: (205) 803-6800
Independent Living Research Utilization
2323 S. Shepherd, Suite 1000
Houston, Texas 77019
Telephone: (713) 520-0232
E-mail:
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Website: http://www.ilru.org
National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895-3944
Telephone: (301) 942-6430 or (800) 896-3650
Fax: (301) 942-2302
E-mail:
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Website: http://www.nfcacares.org
Parent Training and Information Centers
Technical Assistance Alliance for Parent Centers
4826 Chicago Avenue South
Minneapolis, MN 55417
Telephone: (612) 827-2966
E-mail:
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Website: http://www.taalliance.org
Books about Life Planning
Nadworny, John W. and Haddad, Cynthia R. The Special Needs Planning Guide: How to Prepare for Every Stage of Your Child's Life. Baltimore, MD: Brookes Publishing (2007). http://www.brookespublishing.com
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