Parenting a child with special needs takes special planning. Take steps now to arrange for your child's well being, both today and tomorrow. Areas to consider include your child's legal, financial, medical, and educational needs. These same concerns exist if you are the caretaker or guardian of an adult with special needs.

Make Sure Your Child is Cared For
 

What will happen to your child after you die? Plan now for your child’s future quality of life.

Creating and planning your estate is vital to meeting your child’s future needs. Key tools include wills, guardianships and special needs trusts.

Update your Last Will and Testament.

A will declares how you want your estate to be distributed and allows you to select a guardian for your child when you die. It may be especially important to prevent asset distributions to a child with special needs.

If parents die without a will, generally state law will distribute assets to the children. Assets in excess of $2,000 distributed to a person with a disability may jeopardize government benefits, adversely affecting the quality of life for a person with special needs. Work with an attorney to ensure your will addresses your child’s needs.

Write a letter of intent.

A letter of intent is another important document parents should have. Although not legally binding, this document provides direction for the person or persons who will care for your child or other dependent with special needs.

The letter should detail medical history, daily care needs, housing and services, as well as your specific wishes and expectations as they relate to your child’s future. It is a working document for the future caregiver to follow.

One of the best ways to get started developing this letter is to think of a day in the life of your child. What are his or her habits? What are his or her routines? What makes him or her upset?

Share the letter of intent with the person(s) who will be caring for your child. Discuss it. If you aren’t comfortable that they share your views or that they are willing to respect them, you may want to reconsider your choice. A letter of intent is often the most important part of the plan.

Set up a guardianship or conservatorship.

A guardianship or conservatorship is a legal mechanism that grants an adult legal power to make decisions for another person, one who is considered incapable of making decisions himself or herself. In the case of a minor child, generally guardianship or conservatorship will terminate when the child turns 18 or, in some states, upon marriage if the child marries before age 18.

There are also different types of guardianship or conservatorship, each of which grants the guardian or conservator different powers.

  • A "natural guardian" generally refers to a parent. In most cases, a natural guardian has custodial rights but only limited rights to control the assets of a child. “Guardianship of the person” is similar to custody.
  • A “guardian ad litum” is often appointed only for the limited purposes of litigation. “Guardian of the estate” or “guardian of the property” or “conservator” usually refers to someone appointed to manage assets of and make financial decisions for the person deemed incapable. When your child turns 18, he or she may need a guardian or conservator to manage some aspects of his or her life.

General Conservatorship or Guardianship of the Person and Estate

This type of conservatorship or guardianship typically provides full decision-making powers—with respect to finances, medical decisions, living arrangements, etc.—for a person deemed to be unable to make decisions or perform necessary tasks on his or her own.

Limited Conservatorship or Guardianship

Powers of a conservator or guardian can often be limited to reflect the needs of the individual who is incapacitated or disabled, and laws in a number of states specifically provide for the appointment of a limited conservator or guardian for certain individuals with developmental disabilities.**

These types of arrangements are often used in special needs cases. A limited conservator or limited guardian is appropriate for individuals whose conditions impair their ability to care for themselves or their property, but not to the extent that a general conservatorship or full guardianship is required. For example, California law provides that a limited conservator may be appointed only:

  • For adults who have a developmental disability.
  • When a court finds that the conservatee lacks the capacity to perform some, but not all, of the tasks necessary for personal needs or to manage financial resources.

A limited conservatorship or limited guardianship encourages maximum self-reliance and independence of the adult with developmental disabilities by giving the conservator or guardian power only over those activities that the individual is unable to handle.

* Use of terms such as guardian or conservator and their meanings vary according to state. You should seek the advice of your own legal counsel to determine whether these kinds of mechanisms are available in your state and applicable to your own circumstances.

** Developmental disabilities generally are severe, chronic disabilities attributable to mental and/or physical impairment which manifest before age 22 and are likely to continue indefinitely. They result in substantial limitations in three or more areas: self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency, as well as the continuous need for individually planned and coordinated services.

Consider alternatives to guardianship and conservatorship.

Depending on personal circumstances, avenues other than guardianship and conservatorship relationships may exist that can help an individual feel more independent and minimize legal involvement. For example, if your child only needs assistance managing his money, he may be eligible for help through the Supplemental Security Income program (SSI) offered by the Federal government.

If appropriate, an SSI Representative Payee can be designated to receive and disburse SSI money on behalf of your child, a function that might otherwise be performed by a court appointed guardian. The Representative Payee must make an annual accounting to the Social Security Administration on how funds are spent.

Another option is Durable Power of Attorney, whereby the individual who has a disability allows certain decisions, such as medical, property, or living situation, to be made by another person, on his behalf, without court intervention. A Special Needs Trust can also be effectively used by a trustee to manage the finances and personal effects of a person who has a disability, rather than a court-appointed general guardianship or conservatorship.

Federal Citizen Information Center, January 2002, Revised: January 2006, This Life Advice® guide about Planning for Your Child or Other Dependent with Special Needs was produced by the MetLife Consumer Education Center and reviewed by the Administration for Children and Families, U.S. Department of Health and Human Services and Exceptional Parent Magazine.

Develop a Special Needs Trust
 

Meaning well does not always end well. Especially when you have a special needs child.

Many well-intentioned parents don’t realize that an inheritance may cause problems for special-needs children. Under current federal law, any inheritance of more than $2,000 disqualifies them from federal assistance. Get skilled legal advice on these and related matters.

Trusts, in general

Very generally, a trust is a legal entity which permits one person, the donor, to give something to a second person, the trustee, with qualifications that it must be used for the benefit of someone else, the beneficiary.

Assets are owned by the trust. The trustee is usually given the power to manage those assets (e.g., to sell assets, to invest trust funds). In addition, in the case of a special needs trust, the trustee has the discretion to use trust assets for the benefit of the child with special needs. Trusts are governed by state laws and should only be drafted by an attorney who is familiar with this area of law. In addition to legal fees, there may be costs associated with transferring assets to, and administration of, a trust.

Advantage

The primary advantage a special needs trust offers over a direct gift or inheritance is that, if arranged properly, the assets in the trust do not actually belong to the beneficiary. In this way, the trust can provide benefits to an individual but not cause the individual who has a disability to be disqualified from government programs.

A special needs trust holds title to property for the benefit of a child or adult who has a disability. The special needs trust can be used to provide for the needs of a person with a disability and to supplement benefits received from various governmental assistance programs. Special needs trusts typically provide for:

  • eye glasses
  • annual independent check-ups
  • transportation (including vehicle purchase)
  • equipment
  • training programs
  • maintenance
  • education
  • insurance (including payment of premiums)
  • rehabilitation

Special needs trusts also may allow a trustee to give the beneficiary money for:

  • various forms of entertainment (e.g., movies)
  • electronic equipment
  • trips and vacations
  • computer equipment
  • athletic training and competitions
  • companion services/home health aide
  • other items to enhance self-esteem
  • higher quality of medical or dental care that is otherwise provided by any local, state or federal agency or any private insurance policy (where it is clearly supplemental)

A trust can hold cash, stocks, personal property, and real property. It can own and/or be the beneficiary of life insurance. Special needs trusts also can be used to protect personal injury settlements or judgments from jeopardizing government benefit eligibility. Most importantly, special needs trusts can help parents coordinate their estate plans and provide peace of mind that their child will be provided for.

Federal Citizens Information Center, January 2002, Revised: January 2006, This Life Advice® guide about Planning for Your Child or Other Dependent with Special Needs was produced by the MetLife Consumer Education Center and reviewed by the Administration for Children and Families, U.S. Department of Health and Human Services and Exceptional Parent Magazine.

Review Your Life Insurance
 

Will there be money to support your special needs child? Take steps now to build and protect future assets. You want the best for your child’s lifetime care.

But that takes sufficient financial resources—and protection in the event one or both parents die.

Figuring out what your dependent is likely to need is tricky. Ask yourself: What type of life do you envision for the individual with special needs? How much money will he/she need for quality lifetime care?

Start answering the question by estimating your child’s current monthly expenses (whether the costs are paid by you, private insurance, etc.). Annualize these costs. Then, assuming a modest interest rate, determine the lump sum amount you will need to produce that much income on an annual basis without depleting principal. Of course, this does not take inflation or other factors into consideration.

If you are just beginning to accumulate assets to fund a special needs trust, there are a variety of funding options. Discuss these options and which ones might be best for you with an insurance agent, financial planner or other financial professional who specializes in special needs trusts.

A special needs trust can contain personal property, such as artwork. Keep in mind, these assets may not be readily converted into cash. A value of a home also is susceptible to market fluctuation. Moreover, you may want the family home to stay in the family and not have to be sold to provide necessary care.

Investments

Investments, like mutual funds and stock, are another funding option. These types of options, however, do not generally provide a guaranteed amount of income due to market fluctuation and other factors. Retirement plans may offer another option. You may be able to name the trust as beneficiary for any death benefit provided by the plan.

Life Insurance

Many special needs trusts are funded, at least in part, with some type of life insurance. Life insurance provides an alternative that can create an asset. Insurance proceeds are generally paid free of income tax and, as long as the estate is not named as beneficiary, usually outside probate. It also can be free of federal estate tax when properly structured, and it allows you to provide the cash needed to provide for your child with special needs, while keeping the rest of your estate intact for your other family members.

Here are descriptions of the basic types of life insurance.

Term life insurance offers protection that insures your family for a specified period of time–usually anywhere from one to 20 years. A term policy pays a benefit if you die during the period covered by the policy. If you stop paying premiums, the insurance stops. These policies do not build a cash value.

Whole life insurance or permanent insurance provides protection, as well as a cash value. Additionally, many companies pay policyholders an annual dividend. Dividends provide both flexibility and increased value to your life insurance policy. They can add more coverage to your overall insurance benefits and can build a sizable cash value. They are not, however, guaranteed. Of course, life insurance should not be purchased solely for accumulation. Its primary purpose is protection.

Universal life insurance is flexible. These policies are interest-sensitive and permit the owner to adjust the death benefit and/or premium payments, within limits, to fit the individual’s situation. Your premiums are credited to an accumulation fund, from which costs are deducted and to which interest is then credited. As with whole life insurance, the cash value is yours. You may withdraw it or borrow against it at any time. Read your policy carefully to understand how loans and withdrawals affect the death benefit.

Variable life insurance is for those who want to tie the cash value of their life insurance policy to the performance of the financial markets. You decide among several investment options how your net premiums are to be invested. While monies invested in the investment options have potential for growth, such funds are subject to market risks including the loss of principal. In other words, some may make or lose money depending upon the performance of the market and the investment options you select.

Survivorship life insurance is a joint insurance policy taken out on the lives of two people that provides death benefits on the second death when the money is needed the most. Since the policy premium pays one death benefit, the premium can be substantially less than separate stand-alone policies. There are many types of survivorship life insurance policies. Check with your attorney and insurance agent to determine the policy that will best meet your needs.

Your individual needs and the needs of your child will help determine which type is best for you. Insurance policies often contain limitations, exclusions, reductions of benefits and terms for keeping them in force. Be sure to ask for full details regarding the policy and its costs.

Federal Citizen Information Center, January 2002, Revised: January 2006, This Life Advice® guide about Planning for Your Child or Other Dependent with Special Needs was produced by the MetLife Consumer Education Center and reviewed by the Administration for Children and Families, U.S. Department of Health and Human Services and Exceptional Parent Magazine.

Develop a Financial Plan
 

With a special needs child, providing care today is hard enough. But what about your finances tomorrow?

Financial planning is important for everyone. When you have a special needs child, it becomes crucial.

Spend some time thinking and talking with family members about what you would like to achieve financially. What would make you and them happy? What would be fulfilling? Would you like to start your own business? Retire early? Acquire a vacation home? Pursue a hobby? Travel?

If you have a financial planner, this would be a good time for a consultation to review your plan.

Know Your Tax Benefits
 

Raising a special needs child can be expensive. Good news: Some of those expenses are tax deductible.

Unique tax benefits are available to families with individuals who have special needs. Doing your homework may help you save money.

If the special needs child attends a special school (or is in an institution) for the main purpose of alleviating his handicap by using the facility’s resources, then the cost of the child's lodging, meals and transportation is deductible, as are the costs of supervision and care. Regular schools can be classified as a "Special School" if the school has a special curriculum for mentally disabled individuals.

If the child is receiving private tutoring by a specialized teacher, the IRS has ruled that it is deductible. Similarly, special education that is provided for dyslexic children is deductible.

Prescribed vitamin and equestrian therapies are deductible, as are the transportation and conference fees for medical conferences and seminars. For 2006, parents of special needs children could deduct $.18 per mile for medical-related travel and transportation. For 2007, the allowable deduction is $.20 per mile. Additionally, lodging costs up to $50 per day are deductible, excluding the cost of meals.

“Unreimbursed Medical Expenses are deductible only to the extent that the Tax Payer itemizes their deductions (Schedule A) and they exceed 7 and ½ percent of their Adjusted Gross Income (AGI) [10 percent of AGI for the Alternative Minimum Tax (AMT).]"

Some credits are also available to parents of special needs children. For example, if parents were to adopt a special needs child, they might be eligible for an $11,390 credit, regardless of expenses. In order to claim such a credit, the child must be under 18 or be physically or mentally incapable of taking care of themselves. Additionally, the child must be a U.S. citizen or resident and have required adoption assistance. The taxpayer-parent is allowed to claim the credit in the year that the adoption becomes final. This credit is phased out for taxpayers with adjusted gross income exceeding $170,820.

Another credit parents should be aware of is the Earned Income Tax Credit, which is available to taxpayers with a “qualifying child.” Parents should note that the definition of a “qualifying child” has been expanded for disabled children: If a child has special needs, then she is a qualifying child regardless of age, as long as the child resides with the parents. Also, in such cases, there is no gross income limitation.

To ensure you are taking advantage of all the tax benefits and credits available to you, consult with an attorney whose practice focuses on working with families of special needs children.

Academy of Special Needs Planners

Find Financial Aid

Having trouble paying for bills related to your child’s care? There’s help available.

Raising a child is expensive. Raising a child with disabilities is even more expensive. The unique supplies, equipment, treatments, and procedures such a child needs can strain even affluent parents.

State and federal government programs, community resources, Social Security benefits, private foundations, medical insurance and special education resources provide aid. Consult city, county, state and federal agencies for help in answering financial aid questions.

Generally, government benefits are paid to a disabled dependent child, based on family income. But once a child turns 18, these benefits are awarded based on the child’s own assets and income (even if the child is still living at home with the parents).

The most important public benefit programs are Medicaid and Supplemental Security Income (SSI).

Medicaid is a state-administered, federally reimbursed program that pays for needed medical care for eligible persons. An applicant’s medical diagnosis, finances and age are used in determining eligibility. To apply for benefits, contact your local Medicaid office or the state health department.

SSI is a federal program that provides income from the federal government to certain individuals with disabilities. Cash benefits are paid each month, up to the “Federal Benefit Rate.” To apply for SSI, contact your local Social Security Administration office.

Eligibility for both of these programs is based on need, as well as disability. A person is not qualified to receive SSI if he or she has “countable resources” in excess of $2,000 or “countable income” in excess of the Federal Benefit Rate. Keep in mind that gifts or inheritance are “countable resources” and may reduce payments received or cause the child to lose SSI benefits for up to three years. Also, assets in a special needs trust may be claimed by Medicaid upon the death of the beneficiary if Medicaid paid benefits while the trust was in effect. Medicaid laws and the laws pertaining to special needs trusts vary from state to state.

Contact your local Social Security Administration office for additional information.

Plan for Medical Needs
 

Medical insurance is a must for special needs children. Make sure you have the right coverage.

Medical bills for special needs children often start with neo-natal intensive care. As they get older, medical expenses can mount. Having comprehensive coverage is an absolute must.

Obtaining medical insurance authorization for specialized services and products, such as therapy or medical equipment, can be complicated. The following are tips to better manage your medical insurance and get much needed benefits paid:

  • Read your policy! If you have any questions about coverage, call your insurer and ask them to clarify exactly what is covered, under what conditions and at what rate. For example, traditional therapy services often do not take into account the specific needs of infants and children requiring therapeutic intervention. There also may be limits on therapy services.
  • Create a one-page summary of your policy provisions as well as one for limitations and exclusions. This summary can be given to the treating physician or therapist who will either be writing a report or speaking to an insurance company representative on your child’s behalf.
  • Check the list of participating providers if you are part of a Preferred Provider Plan or Health Maintenance Organization (HMO). You may be limited to using only providers within the network. Make sure there are professionals qualified to serve children and or adults with special needs. You may have the option of using out-of-network providers, but be required to pay more out of pocket. The out-of-network option may be useful if your child requires non-participating medical specialists such as pediatric therapists or neurosurgeons.
  • Speak with the same case manager or claims supervisor, if possible. When you call your insurance company, ask for the name and phone number of the representative and try to speak with that person every time. He or she may become familiar with the needs of your child and you will not have to repeat your child’s story.
  • Request a case manager be assigned to you if your child has ongoing medical or therapy services. Working with the same people can provide continuity of services.
  • Include a photograph of your child when you submit a claim or begin your relationship with a case manager. Photos can personalize a case file, which might earn “special treatment” when trying to resolve problems that might arise.
  • Obtain prior authorization for therapy, prescriptions or equipment from your insurer. Call your case manager and ask if there is any procedure regarding prior authorization. Your insurer may require a letter of medical necessity, or the written prescription from your primary care physician.
  • Stay on top of your child’s case. Document everything, from phone calls to faxes, and include dates. Send all correspondence by certified mail so you have a return receipt for documents you send. Call the insurer if you don’t get a timely acknowledgment of your correspondence. Keep copies of everything.
  • Obtain a claim denial in writing. It should include the specific reason for denial. Insurance companies are legally obligated to provide this. Question denials, and if you believe the claim is valid, appeal the denial and resubmit the claim.

Making the most of your medical insurance can be time consuming and sometimes exasperating. However, being the parent of a child with special needs also means being his or her advocate. By being organized and proactive, you can give your child the best possible quality of life.

Federal Citizens Information Center, January 2002, Revised: January 2006, This Life Advice® guide about Planning for Your Child or Other Dependent with Special Needs was produced by the MetLife Consumer Education Center and reviewed by the Administration for Children and Families, U.S. Department of Health and Human Services and Exceptional Parent Magazine.

Plan for Educational Needs
 

Special needs children deserve a quality education. Become your child’s advocate.

As a special needs parent, take steps to make sure your child gets the best education possible. Job one: knowing what the law mandates.

Early Intervention

Early intervention provides support for infants and young children who have disabilities or developmental delays. Early intervention services include but are not limited to identification and screening, occupational therapy, speech pathology, and physiotherapy.

The services are provided for the purpose of lessening the effects of the conditions and enhancing the child’s development. Early intervention can have significant impact on the child and the family by reducing the number of special services needed, reducing stress and frustration, and possibly making the child indistinguishable from mainstream classmates.

Individuals with Disabilities Education Act (IDEA)

The Individuals with Disabilities Education Act (IDEA), which amended the Education For All Handicapped Children Act, requires that children with disabilities receive:

  1. Free appropriate public education (for children ages 3-21).
  2. Education as close to home as possible with children who do not have disabilities.
  3. Supplemental services (such as speech therapy or a classroom aide) to complete their education.
  4. An assessment to determine the child’s needs.

In order to assure that your child gets the best possible education, this law includes two protections: Individualized Education Program and Due Process.

Individualized Education Program (IEP)

An IEP is a written statement about your child’s abilities and impairments required under the IDEA. It’s developed by you, school district personnel and educational professionals who have evaluated your child’s abilities. In some cases, the school nurse or primary health care provider should be included. The IEP must be revised at least annually for all children with disabilities.

Due Process

Due process generally requires that no changes are made in a child’s IEP without certain procedural protections. The scope of this is not absolute but due process provides a mechanism for resolution of disagreements.

Before entering an IEP meeting, parents should understand what their overall rights and responsibilities are:

  • You have the right to information about your child and the child’s educational program. You have the responsibility for seeking and maintaining this information.
  • You have the right to review your child’s records. You have the responsibility for asking questions when you do not understand terms in reports.
  • You have the right to be full partners in your child’s educational program. You have the responsibility for becoming and remaining active members of the team.
  • You have the right to make suggestions or recommendations about your child’s program or services. You have the responsibility for doing so.
  • You have the right to a vision for your child’s future. You have the responsibility for helping your child achieve it.

Federal Citizens Information Center, January 2002, Revised: January 2006, This Life Advice® guide about Planning for Your Child or Other Dependent with Special Needs was produced by the MetLife Consumer Education Center and reviewed by the Administration for Children and Families, U.S. Department of Health and Human Services and Exceptional Parent Magazine.

Help Your Child Transition to Work
 

Is there life after special education? Help your child answer that question.

Funding for skills development and job training is limited. Waiting lists can last for years. What to do? Support your child in the transition between school and work.

For many young adults with special needs, the goal is achieving some degree of independence through work.

Given the potential obstacles to reaching this goal, it’s critical for parents to get involved early and seek advice from professionals, including an attorney whose practice focuses on special needs and a local disability advocate.

It’s also helpful to gain some understanding of the disability employment “landscape,” and what it may mean for your child.

The Employment Picture

The National Collaborative on Workforce and Disability found that only 26 percent of working-age adults with disabilities are employed either in a job or their own business.

While a combination of federal initiatives, private endeavors and technological advancements have made a difference, many individuals with disabilities continue to face obstacles to employment. Several laws have addressed this issue, most notably the groundbreaking Americans With Disabilities Act (ADA) of 1990.

How Your Child Can Prepare

If your child hopes to join the workforce, even part time, planning will be key. According to the PACER Center, a Minneapolis-based national organization that assists families with transition issues, parents should begin planning five to 12 years before the child’s graduation.

The transition process is formalized under IDEA, which requires special education programs to provide students with transition planning at age 14. Specifically, a written transition plan must be incorporated into the child’s Individualized Education Plan (IEP).

The plan should reflect the vocational interests of the child and draw on the perspectives of transition team members, including parents, teachers, disability advocates, vocational rehabilitation (VR) specialists and adult service providers. The IEP team must provide expert assessment of the child’s skills and, no later than age 16, direct the student to the appropriate, district-funded skills development programs.

The team also must ensure that the student’s progress is measured on a regular basis to determine whether additional services are required.

Throughout the transition process, parents need to take an active role. Parents are responsible for registering their children with local disability service agencies that serve adults. Parents also may need to take the lead in seeking out employment opportunities during the high school years, so their children can gain a “real life” perspective on the world of work.

After graduation, young adults who qualify for Supplemental Security Insurance (SSI) of Social Security Disability Insurance (SSDI) may be eligible for additional skills development programs as well as “customized” or “supported” employment programs.

Offered both through VRs and private agencies, customized employment helps connect qualified applicants with employers and ensure that employees have all the resources necessary to succeed in the workplace. Parents should be aware that once a child is employed, earnings will have an impact on disability benefits.

Academy of Special Needs Planners

Find Support
 

As the parent of a special needs child, you are different. But you don’t have to be alone.

Caring for your child is demanding and can be isolating. Don’t be a hero. Get help when you need it. Consider the following organizations:

Alliance of Genetic Support Groups
4301 Connecticut Ave. NW, #404
Washington, D.C. 20008
1-800/336-GENE
www.geneticalliance.org
The Alliance of Genetic Support Groups is a non-profit organization dedicated to helping individuals who have genetic disorders and their families. Its toll-free helpline is a resource for consumers and professionals looking for genetic support groups and genetic services.

National Council on Disability
1331 F Street NW, #1050
Washington, DC 20004
202/272-2004
www.ncd.gov
The National Council on Disability (NCD) is an independent federal agency making recommendations to the President and Congress on issues affecting some 54 million Americans with disabilities.

National Information Center for Children and Youth with Disabilities (NICHCY)
PO Box 1492
Washington, DC 20013-1492
1-800/695-0285
www.nichcy.org
NICHCY is the national information and referral center that provides information on disabilities and disability-related issues for families, educators, and other professionals.

National Organization for Rare Diseases (NORD)
PO Box 8923
New Fairfield, CT 06812-8923
1-800/999-6673
www.rarediseases.org
A federation of more than 140 non-profit voluntary health organizations serving people, NORD provides assistance to support groups, healthcare and human service professionals and advocates for people with rare disorders and disabilities.

Federal Citizens Information Center, January 2002, Revised: January 2006, This Life Advice® guide about Planning for Your Child or Other Dependent with Special Needs was produced by the MetLife Consumer Education Center and reviewed by the Administration for Children and Families, U.S. Department of Health and Human Services and Exceptional Parent Magazine.