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Featured Experts
Mary Castro Summers
Mary Castro SummersPatient and Family Resource Specialist, Franciscan Children's
Chris Waddell
Chris WaddellCertified Financial Planner, CFP(R)
Dania Ermentrout
Dania ErmentroutNorth Carolina Medicaid CAP/C Pediatric Case Manager, Footprints Case Management
Laurel S. Collins
Laurel S. CollinsEducational Advocate and Consultant
Christine Lai
Christine LaiCo-Founder & Executive Director, Special Education Legal Fund
Valerie Zaloom Buccino
Valerie Zaloom BuccinoAttorney at law. Owner and principal attorney at The Law Office of Valerie Zaloom Buccino, Esq. LLC., The Law Office of Regina Skyer and Associates of Counsel
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Parents of children with special needs know that each day brings small and large victories. Parenting children with special needs also comes with unique challenges, including increased financial responsibilities and more complex planning requirements for the future. The cost of therapies, medical procedures, equipment and caregiving — on top of wages lost as a result of caretaking duties — can be daunting. Because these children may continue to require care into adulthood, sound financial and estate planning is essential to ensure they're cared for even after you're gone.

Try not to get overwhelmed at the thought of financial planning for a child with special needs. This guide is focused on helping you plan one step at a time, learn what help is available and talk to other parents in your situation. A sound strategy can help you take concrete steps to manage your finances and gain peace of mind for your child's financial future.

Steps to Creating a Plan for Your Child With Special Needs

Planning for an uncertain and expensive future can be daunting. Parents of children with special needs often worry about who will care for their children and how their children will manage when they’re gone.

“Once you become a parent, you worry about everything,” says Valerie Zaloom Buccino, Esq., an attorney specializing in estate planning, special needs planning and guardianship. “This worry never ends, but for parents with children with special needs, this worry takes on a much different meaning.”

Though all parents need to plan for their children’s future, parents of kids with special needs have to take more steps than others. Breaking down the tasks and tackling them over time can help you feel less perplexed.

Step 1. Find Your Community

Teachers enjoy the outdoors with a student with special needs

Parents who are living through similar circumstances can provide emotional support and a wealth of information. Finding your community where special needs families can search for advice, referrals and moral support is vital.

“Parents in a similar situation are going to be the most capable of directing people,” Dania Ermentrout, a case manager in North Carolina’s Medicaid program and parent of a medically fragile daughter, said.

They may have already solved the exact problem you’re facing. Eramentrout also recommends finding or starting a Facebook group to connect with other parents of kids with similar diagnoses. “That’s where I get most of my survival tips,” she said.

Christine Lai, founder of the Special Education Legal Fund and a parent of a child with autism, also recommends finding community online.

“The Internet is obviously a great thing,” Lai said. “But for families with special needs, it is a tremendous resource that people outside of the community might not understand. For a family that doesn't know anyone, no one in their circle has had this experience, or maybe they live in a remote area, this is a real lifesaver.

Step 2. Assess Your Financial Situation

A student using a wheelchair looks at a computer tablet with his caretaker

Most people need to adjust to the level of expenses required to care for children with special needs. The first step in an effective plan is a realistic assessment of your current situation. Start asking and seeking answers for questions such as:

  • Do you have assets to pay for your child’s expenses?
  • Do you have debts you need to manage?
  • Can you scale back on other spending to make room for new costs?

These questions may not have easy answers, but putting some thought into them will help you build your plan on a solid foundation.

Step 3. Learn the Landscape

A physical therapist works with a boy who has special needs

Explore these vital programs and resources for kids with special needs, even if you think you don’t qualify.

Medicaid
Medicaid covers care for children with disabilities, typically under Medicaid waivers specific to each state. Visit KidsWaivers or your state’s Medicaid agency to learn about programs where you live.

Medicare
Better known as insurance for older Americans, Medicare also covers some younger people with disabilities. If you qualify for Social Security disability benefits, you can enroll in Medicare Part A, which covers hospitalization, and Part B for doctor visits and medical equipment.

Social Security Disability Benefits
The Social Security Administration provides cash benefits for children with disabilities and adults who became disabled before age 22 via Supplemental Security Income (SSI). SSI may be used for food, clothing and housing.

Applying and qualifying for SSI or SSDI requires an extensive process, and your child must meet clinical criteria.

Step 4. Speak With Trusted Experts

Parents who have a child with disabilities speaks with a financial advisor

Navigating education, insurance, finances and the legalities of raising a child with special needs is complex. It's a good idea to consult expert financial advisors, special needs attorneys and special education advocates. Ensure they have expertise in special needs issues and relevant programs such as Medicaid, Medicare and Social Security.

Step 5. Set Goals

A college student who uses a wheelchair chooses books in the campus library

Set short- and long-term goals for your financial plan and then expect to adapt.

When parents of a 5-year-old with special needs asked Buccino how to plan for their child outliving them, she answered, "We have to take this a step at a time. An estate plan will have to change as your child gets older."

She tells clients to plan for today, but be ready to adjust and amend the plan as things change.

"Kids with special needs often achieve more than we dare to hope for," Buccino says. "I've seen it time and time again. So we prepare for the worst, and once everything is in place, I ask them to put it aside, and allow yourself to hope for the best."

Step 6. Build Short- and Long-Term Strategies to Meet Your Goals

A middle-aged couple signs legal papers providing security for their adult child with disabilities

For many parents with children with special needs, it helps to consider short- and long-term needs when making plans for their children.

Short-Term Strategies
Parents may face lost income resulting from the time required to care for their children. In a two-earner household, assess which parent's income is larger and more stable and who has access to better health benefits. If one parent decides to stop working outside the home to care for a child with special needs, both parents must acknowledge the loss of income and professional purpose for the parent who is suspending their career.

Based on potentially decreased income and increased expenses, build a budget and financial plan for the anticipated costs, and if possible, a cushion for unanticipated expenses. Look at your current health insurance coverage, and maximize your health savings or flexible savings account if you have one.

Families facing the cost of therapies, medical procedures and caregiving typically need to seek assistance and public benefits to help cover costs.

Waiting lists for services can be years long. Even if you qualify for benefits, there may be waitlists for programs like residential facilities or expert evaluations. Get organized to start the process as soon as you can.

Long-Term Strategies
Estate planning is important for all parents, but when you have kids with special needs, it is essential. Consult an attorney to develop an estate plan that should, at a minimum, include a will, health care proxy and power of attorney. These documents let you specify what should happen and who should care for your child if you die or become incapacitated. Discussing your wishes with family members or close friends can be difficult but will ultimately help protect your child in the future.

You may also want to write a letter of intent, an important estate planning document that does not require a lawyer. This type of letter documents your child’s needs and provides instructions for anyone who may need to care for them if you cannot.

Life insurance and retirement savings are important components of a long-term financial plan. Though you may find it challenging to save for the future, if you possibly can, you will contribute to your family’s financial health over time.

Step 7. Get Organized

A person looks through their personal documents

Gather personal information for you and your child, including:

  • Birth certificates, Social Security numbers and insurance policy information.
  • Usernames and passwords for online services including banks, patient portals, investment accounts and social media accounts.
  • Emergency contacts.
  • Medical information such as names and locations of doctors and hospitals, diagnoses, medications, equipment and allergies.
  • Financial information including investments, asset information, financial advisor information, information on your income and expenses like mortgages or other debts.
  • Legal documents such as a power of attorney and will.

These details can help in a crisis when the last thing you want to worry about is finding your passwords or making sure family members can access your key information.

Build your repository of information one step at a time, so it doesn't overwhelm you. Just imagine how much better off you'll be to have your information together if you need help.

Tools for Financial Planning

Raising a child with special needs can be extremely expensive, but there are ways to mitigate these costs. Special financial instruments exist specifically to help families raising children with special needs.

ABLE Accounts

ABLE accounts are investment and savings accounts created by the Achieving a Better Life Experience Act enacted in 2014. They have specific tax advantages.


How do ABLE accounts work?This is an icon

ABLE accounts are owned by the individual with the disability, but others can contribute. These accounts let families save for their children without risking eligibility for public assistance programs. For example, ABLE account savings don’t limit Medicaid eligibility, provided savings don’t exceed the state’s 529 savings limit.

The annual cap on contributions to an ABLE account is $15,000. Total contributions over time are limited to the individual's state limits on 529 accounts. People who are disabled receiving SSI benefits may face additional limits. SSI cash benefits might be suspended if the ABLE account exceeds $100,000. If the beneficiary dies, Medicaid may recoup costs for that beneficiary from their remaining ABLE account funds.

Like 529 college savings, you can choose the state program with an ABLE account that works for you even if you don’t live in that state.

What can ABLE funds be used for?This is an icon

Funds can be used for qualified expenses like personal support, health care, assistive technology, education, transportation, housing or other services that help individuals with disabilities live independently and improve their quality of life.

Who qualifies for ABLE accounts?This is an icon

ABLE accounts are for people with significant disabilities whose disability began before age 26. The individual can open an account after age 26, but their disability must have started before then.

If the individual has already qualified for SSI or SSDI, they can automatically create an ABLE account. If not, they may still be eligible with a physician's letter if they meet the age and disability criteria.

Special Needs Trust

Trusts are a legal way to transfer assets to a third party (the trustee) to benefit another (the beneficiary). Trusts are created by a "grantor," who typically works with a lawyer to establish the trust, name the beneficiary or beneficiaries, identify the trustee and transfer assets into the trust. The grantor can designate themselves as a trustee and name successor trustees if they become incapacitated or die.

Among the benefits of a trust are the efficient distribution of assets to heirs without court involvement, the ability to specify how you want the assets to be used, avoiding certain taxes and protecting assets from creditors or lawsuits.

A special needs trust (SNT) is a trust set up to benefit an individual with special needs to supplement public benefits without disqualifying them from those benefits.

  • Funds from an SNT can be used for expenses that Medicaid or SSI does not, like education or vacation expenses, but not food or housing, which SSI would cover.
  • "We strongly recommend a corporate trustee because they are immortal," explained Christopher Waddell, Certified Financial Planner and Managing Director of the Waddell Group.

Corporate trustees provide continuity, professionalism, and protection against the possibility that relatives fail to guard the beneficiary's interests.


What is a first-party special needs trust?This is an icon

A first-party special needs trust contains assets owned by a person with special needs. The individual with a disability must own the assets, though a parent or guardian sets up the trust before the beneficiary turns 65.

The individual with a disability must own the assets, though a parent or guardian sets up the trust before the beneficiary turns 65.

When the beneficiary dies, the trust must reimburse Medicaid for their spending on that individual. First-party SNTs must be irrevocable, so they cannot be changed once they're set up. These trusts are appropriate if the individual with special needs has assets that would otherwise disqualify them from public benefits, such as from an inheritance or a lawsuit settlement.

What is a third-party special needs trust?This is an icon

Third-party special needs trusts are initiated by a third party who donates assets to the trust to help the individual with special needs supplement their publicly funded benefits while the donor is alive. Assets pass to the beneficiary when the donor dies. There is no age limit on third-party SNTs.

Unlike first-party SNTs, because the beneficiary never technically owned the trust assets, third-party SNTs do not need to reimburse Medicaid. On the other hand, they cannot hold any assets owned directly by the beneficiary, such as an inheritance or settlement payment.

Unlike first-party SNTs, because the beneficiary never technically owned the trust assets, third-party SNTs do not need to reimburse Medicaid. On the other hand, they cannot hold any assets owned directly by the beneficiary, such as an inheritance or settlement payment.

What is a pooled trust?This is an icon

Nonprofit organizations create pooled special needs trusts for the benefit of multiple beneficiaries who create individual accounts within the pooled trust. These trusts can be low cost and more stable because they pool the assets of multiple beneficiaries. They can be appropriate for beneficiaries with few assets in their name. Like first-party SNTs, Medicaid must be reimbursed with remaining assets when the beneficiary dies, but the trust may be allowed to keep a portion of remaining assets to support others in the pool.

Special Needs Trust and Supplemental Security Income (SSI)

Some trusts are counted as assets of the trust beneficiary and could reduce the individual's Supplemental Security Income (SSI) benefits. To avoid unintentionally disqualifying your child from government assistance, be careful when using the funds. If your child receives cash from the trust, their SSI benefits can be reduced dollar for dollar. Using the trust to pay for food, housing and housing-related expenses like taxes or utilities, can also reduce benefits.

SNTs can pay for other items, but check the details with a special needs planner or attorney.

Life Insurance for Parents of Children With Special Needs

A child who uses a wheelchair works hard in his classroom

Life insurance is essential if anyone else relies on your income. When you die, life insurance pays out a death benefit meant to replace your income, cover your debts and pay for your funeral expenses.

Parents can protect their children who have special needs with life insurance, which can cover the child’s expenses after the parents are gone.

Some families may also consider buying a life insurance policy for the child with special needs. Though it may be unpleasant to contemplate, if you outlive your child, the life insurance policy can replace your lost wages and retirement benefits.

Whole Life

Whole life insurance typically covers the insured individual indefinitely — as long as they pay the premium — and guarantees a death benefit payout. Whole life insurance value accumulates over the life of the policy and can be expensive.

Term Life

Term life insurance is guaranteed for a set period. If the insured person dies during that term, the insurer pays out the death benefit. There is no cash value to a term life insurance policy, so it is usually less expensive.

Guardianship or Conservatorship

Guardianship, also known as conservatorship, is the legal process of appointing a guardian to make decisions for another person.

Typically, parents make these decisions, but when children turn 18, parents no longer have decision-making authority on their behalf. Children with special needs may not be able to make decisions for themselves and may still need someone to support them.

To be appointed legal guardians, parents (or other responsible adults) need to petition the court. One parent or both could be designated guardian or co-guardians. If parents cannot agree on who should be the guardian, the court may appoint someone else.

Even if one or both parents serve as guardians, they should designate in their will who would take over for them if they die. Guardians should appoint successor guardians in the event that the chosen guardian dies or is unable to serve in that role.

Cost of Services for Adult Children Living With Disabilities

When children with special needs become adults, they may still need costly services. To ensure your adult child is financially secure, consider and incorporate these costs into your long-term financial plan.

Group Home or Independent Living Center

Cost
$3,500–$8,950 per month

Group homes and independent living centers provide supportive residential services for adults with special needs. Staffed by counselors or other professionals, these homes can be appropriate for adults who cannot live independently but do not need more advanced care. The cost of a group home varies greatly depending on location. States will subsidize the cost of living in a group home for those who qualify, but the waiting lists can be long.

Day Programs

Cost
$31 to $130 per day

Day programs provide adults with disabilities structure and support during the day but do not provide housing. Costs vary widely depending on several factors. The average price is $61 per day or $7,750 to $32,500 per year. The yearly average is $15,250, assuming five days per week for 50 weeks.

Personal Care Professionals

Cost
$14 to $27 per hour

Personal care professionals or attendants (PCAs) help people with disabilities manage daily living activities like bathing, dressing or eating and basic chores like shopping or cleaning. They might be friends or even family members and be paid privately or through a public program. They can be hired independently or through a home care agency. Depending on the caregiver's needs and training, a PCA could be a home health aide, home care nurse or nursing assistant.

Long-Term Care Facility

Cost
$47,000 average per year

Long-term care facilities are residential facilities for people with disabilities who cannot live at home. In assisted living facilities, residents live in apartments with access to support services like help with bathing or cleaning. Skilled nursing facilities provide more constant medical or nursing care. Costs range from $45,000 per year for assisted living, $85,775 for semi-private nursing home care and $65,000 to $120,000 per year for private rooms in licensed nursing homes.

Assistive Equipment and Technology

Cost
$382–$4,800

Assistive equipment can help people with disabilities live independently. Examples include mobility aids like wheelchairs or scooters, home modifications like ramps or grab bars, hearing aids and software or hardware that help people communicate like voice recognition programs. Some applications and software programs are free or low cost.

Insurance

Cost
Varies

Insurance costs depend on the type of coverage. Of 22 million non-elderly adults with disabilities in 2015, 11% were uninsured, 48% were covered by Medicaid, Medicare or other public insurance and 41% had private insurance, according to Kaiser Family Foundation's "Medicaid Restructuring Under the American Health Care Act and Nonelderly Adults with Disabilities." Medicaid provides free or low-cost health insurance for people with disabilities, and Medicare covers some disabled people younger than 65. For adults who don't qualify for Medicaid or Medicare, Marketplace plans are available with subsidies for qualified people.

Medicaid programs vary by state and eligibility category. Enrollees typically pay no premiums and minimal if any copayments.
  • Medicare Part A monthly premiums: $0–$458 per month
  • Medicare Part B monthly premiums: $144 per month
  • Marketplace plans: $331–$501 per month

Additional Health Care

Cost
Varies

Health insurance doesn’t cover everything, so people have to pay out-of-pocket for certain services that are not covered or for care from health care providers who don’t participate in their health insurance plan. Even with insurance, consumers pay some of the costs of medical visits and procedures, medications, and medical equipment.

  • Medicare Part A: $1,408 deductible, $352–$704 coinsurance for 61 or more days in the hospital
  • Medicare Part B: $198 deductible, 20% of Medicare-approved fees for outpatient care and durable medical equipment
  • Marketplace plans: $28–$6,506 deductible, $1,187–$7,735 average out-of-pocket maximum

Increased Living Expenses

Cost
$1,170 to $6,952 per year

People with disabilities face increased living expenses in categories such as housing, transportation and food. People with disabilities are more likely to face financial hardships because of the added costs of living and lower employment rates.

Expert Tips on How to Find Support and Navigate Challenges

  1. Recognizing the diversity of needs children and families may have, what are some common challenges families face with financial, legal or insurance issues related to their children's needs?

    Assuring access to health care is paramount in the minds of parents of all children with special health care needs. The current commercial insurance system is not always sufficient or affordable due to growing premiums, coverage limitations and increasing family and individual deductibles. Medicaid coverage may be available through specialized programs. Some states offer opportunities to buy into their Medicaid program for secondary coverage to ensure children's complex medical needs are met.

    Research confirms what families tell us: Special health care needs impact families in many ways, including financially. Many children require 24/7 management and monitoring, which can seriously impact a parent's ability to work outside of the home; this impacts the family's overall financial health. Out-of-pocket expenses like medically necessary health services, equipment, supplies and accessibility needs are not always covered by health insurance. Public (Medicaid) and commercial insurers offer some level of financial coverage. Still, families often struggle to identify what is available and where and then meet application requirements while also caring for their child's complex health situations.

    There are two legal areas of importance to families, as well. The first is establishing plans to support the ongoing financial demands for their children's special health care and future needs. Special needs estate planning practice is a specialty field in which attorneys and staff are familiar with legal and financial planning vessels and government benefits regulations. Once an estate plan is developed, it is necessary to review and assess what changes may be needed over time. The second comes when a young adult approaches the age of 18. The family and medical team should review the child's capacity to make sound judgments around health, financial and social needs. Families may assess medical, psychological and social concerns and consider shared or custodial decision-making powers through their probate court.

    We want every child in the least restrictive environment, which is inclusion. However, some kids can't handle that. The biggest frustration for families I work with is the lack of resources out there. Right now, we're looking at waitlists. Unless you happen to have the right insurance, it's very complicated. You can barely get home-applied behavioral analysis for your student, even if you have a state-funded plan.

    If you claim your child who receives any sort of disability payment, there's a huge process you go through with the government. If you are a single parent and sole guardian, which many people are, you can't apply for adult foster care, which is another form of state service to help keep your child at home getting the right services. There is some emergency funding for extreme situations. As far as financial support from school districts, it's been very hard to get.

    The other issue is the referral process. You have to show a lifelong intellectual impairment, and it's backlogged everywhere. (During Covid-19) We have no funding for students who were in group homes or who ended up having to stay at school. Some of them couldn't see their families for four or five months for a visit, which was a safety issue. And that is pretty much across the board with public day schools and private day schools.

    Guardianship, such as divorce-related custody disputes; short-term guardianship for families facing health, housing, or other crises; and long-term guardianship needs for children who survive their caregivers; and financial planning for children who have highly complex medical needs and require trained caregivers are common challenges.

    There is no real one-size-fits-all response to encapsulate families' legal and financial services' needs. Still, I recommend that parents and caregivers, especially single parents, work to identify, educate and train short- and long-term caregivers. The latter can step in and take over during a brief or permanent crisis. Caregivers can take the form of siblings, friends, relatives, paid guardianship associations or other parents of children with similar diagnoses who enter into a mutual pact.

    I also recommend working with an attorney to formalize the arrangement. If families can't afford legal services, local law student legal clinics or legal aid may help families or provide a pro bono referral.

    Identifying, applying for, creating and protecting financial support streams for medically fragile children and their proposed caregivers is necessary, as some forms of support may take years to develop. This can frequently include applying for state waiver programs and federal disability benefits, researching guardianship companies and affordable supportive housing options and setting up specialized financial accounts.

    People don't want to have uncomfortable conversations to identify caregivers. It might be difficult to find the time and funds for a will and a special needs trust account, particularly since the needs families face right now are profound, financially debilitating and frequently all-consuming.

    When your child is identified for a special education need, it's because they're having trouble in school. So the school calls you every day because something happened or your child did something, acted out, didn't do something or whatever the situation is. You are simultaneously dealing with the school and the administrative process going to doctors, therapists, psychiatrists, and specialists to figure out what's going on.

    The school retains a Child Find responsibility that is laid out in the Individuals with Disabilities in Education Act (IDEA) to identify children who have a special education need. Child Find means that it is the school's responsibility, rather than the parents, who are not experts, to identify kids with special education needs.

    When the referral process starts, the district is supposed to initiate an evaluation based on the child's needs, including speech, physical therapy, occupational therapy and neuropsychological. But this process can take a long time, and time matters when a child is young and needs services.

    My son was referred for special education in January. We did not complete the evaluation and have the subsequent meeting to talk about the evaluation until June. Families can choose to have a private evaluation done and pay out of pocket, but that requires resources unless your insurance company covers it.

    Some families move forward with a private evaluation because that's the only way they can move forward in a timely fashion. But here you're talking about a cost of $3,000 to $6,000 — most families can't afford that.

    When there is a disagreement between the school and the parent, the issue sometimes requires a special education advocate or special education attorney on the parent's behalf to reach an agreeable resolution. This has a cost to it as well; advocates may charge in a range of $100–$200 per hour, and attorneys from $350–$500 an hour for multiple hours. A due process case, for example, could be many hours with multiple parties involved. Again, not something that's in your average family's household budget.

    An education dispute between a parent of a child with special educational needs and the school district can be resolved through a due process hearing. This resembles a regular court trial, but it's specific to an IDEA dispute.

    For a lot of my clients, there is additional collateral damage to consider. Many of my clients speak English as a second language and may fear for their immigration status; there are also many cultural barriers in different countries that prevent families from speaking out and pushing back.

    Planning to provide for an individual who may be limited both in earning power and impacted by complex government benefit rules can be overwhelming. The challenge of coordinating schools, doctors, therapists and benefits, in addition to regular life issues, takes a lot of time. As I once said to my nursing home-bound father, "It's busy being you."

    As parents, we provide not just love but also infrastructure, including food, shelter, health care and decision making. When the day comes that we can no longer provide, now what? We help replace that infrastructure. Government benefits can be an important resource. To qualify for some benefits, a person must be not only disabled but impoverished. While not all assets are counted, families who hope to go beyond the governmental minimums need to plan. Lawyers are good at creating documents, but many families will just end up with an expensive three-ring binder without ongoing guidance on a long-term plan.

  2. How do these challenges change as children grow? How should parents prepare, and what should they prepare for over time?

    As parents develop an understanding of a child’s special health care needs, it is necessary to work with their medical and school teams to develop and support a child’s vision for the future. Medical and academic services and family support may yield increasing levels of independence into the teen years and beyond. Changes over time will lead parents to review and revise their understanding of their child’s abilities and ongoing needs.

    Children may improve and no longer require services; they might stabilize medically but continue to require extensive support for their activities of daily living; they might continue to follow the trajectories of their diseases and require continued supports in all areas; or they might tragically pass away during an acute health crisis.

    Diagnoses frequently dictate the types of challenges families will face and the trajectories that their children will follow. However, parents of medically complex children have radically different experiences based on the level of financial and caregiving support they receive. I encourage all families to explore and apply for the available and applicable state Medicaid waivers and federal disability to maximize that support. If a family is currently living in a location that doesn't provide sustainable support, considering a move could alleviate considerable stress.

    The resource Kidswaivers.org details the diversity of waiver programs by state, and not all states offer equal options to families across the lifespan. Take North Carolina, for example. Children with medically complex conditions who meet waiver criteria can immediately access the waiver following a successful application process. Compare that to children with developmental disabilities who are profoundly impacted behaviorally, but medically stable. The waiver that meets their needs has a waiting list in the tens of thousands of children, with children at present waiting as many as 10–15 years with no access to the waiver. When you see the drastic differences between states and between diagnoses, it becomes apparent why a move could bring relief.

    Students who have special education needs fall under the protection of IDEA from the age of 3 to — in some cases — 21. The main points of preparation for parents are at the times of transition — from preschool to kindergarten, from elementary school to middle school, from middle school to high school and then to post-secondary life. The IEP can be a useful tool to handle all stages of these transitions, especially the transition post-high school to employment and independent life.

    Parents should imagine taking a 30-day vacation with no cell phone. What needs to happen? Who will do it? What do they need to know? A letter of intent is a non-legally binding way of codifying instructions. The Special Needs Alliance has good resources for this.

    The absence of in-person schools and professional caregivers for young families due to COVID-19 provides an early lifeboat drill for what many families face when their child ages out of the school system. Meaningful progress on academic goals takes a back seat to health, safety and executive functioning. I may or may not see Spot run, but if my kid can't scrub his hands and keep them out of his mouth, we could all get VERY sick.

    If you are the parent of a child who is developmentally disabled and about to turn 18, you may want to consider establishing a guardianship so that you have the legal authority to continue to make decisions regarding the health, education and welfare of your adult child. If your child is not developmentally disabled, and even if he or she is, there are less involved alternatives for assisting an adult child. For example, if the issue is financial, parents can be named the representative payees for SSI payments and the authorized representative for Medicaid benefits. If the adult child has the capacity, he or she might sign a power of attorney. For health care, the person with a disability may execute a health care proxy and a HIPAA authorization. When my daughter turned 18, she signed a power of attorney, health care proxy and a HIPAA authorization.

    If the child is a minor, parents must think about who they would like to care for that child in the event of the parent's death or incapacity. They also must consider who will be making financial decisions and how assets are to be held for their child. They must ask themselves whether they think their child will manage their own finances when they reach adulthood. You can leave property to your child, but doing so without careful planning can jeopardize his or her ability to receive SSI and Medicaid benefits.

    A special needs trust can be created as part of an estate plan. You can make provisions in your will or revocable living trust. This is referred to as a testamentary trust and is funded upon your death. Alternatively, you may choose to create an inter vivos or stand-alone SNT. It allows you to fund the trust while you are alive and for relatives to gift money to your child and not interfere with their benefits.

  3. What are some strategies or resources parents may be able to use to help manage the financial burdens they’re facing?

    Family organizations are a valuable resource in our community. Parents often need a sounding board to understand, in human terms, what are the effects of a medical diagnosis and its effects on their child. Turn to trained professionals and families who have faced similar challenges; their shared knowledge and perspectives will clarify the decision-making process.

    For families facing projected needs involving hospital bills, therapy and equipment costs, caregiving costs and extensive home and vehicle modification needs, the only real relief would be through a state waiver program. Finding a way to qualify for a waiver by moving or reapplying with support from an experienced parent is important.

    Reach out to medical providers and other families with similar circumstances in different states. How are other families managing? What financial hacks and supports are they using? So many resources are diagnosis or need-specific, so other families in your shoes may know better than anyone how to access care and alleviate the financial strain.

    If, after surveying the options, there is little support for your family's needs, consider advocacy. Significant change at the local and state level is possible through legislative advocacy and participation in state committees that monitor service provision and resources. Seek out local advocacy groups and connect with families experiencing the same resource and service gaps. On a national level, Little Lobbyists can provide a blueprint for families looking to connect and take collective action.

    It takes a village to raise a child, which takes on new meaning for a child with special needs. Finding a community that supports you is incredibly important.

    I would highly recommend seeking the guidance of an experienced estate planning attorney to prepare the special needs trust and a financial advisor that specializes in planning for children with special needs to fund the trust properly.

  4. How do you recommend parents advocate for themselves and their children to access the resources they need?

    Family organizations can be a source of strength as families learn about the role and resources of care systems, such as government agencies that oversee supportive services. Parents freely share their experiences and resources, which builds collective knowledge and strength in advocating for each family's needs. Be sure to include your child, from an early age, in the process of developing a vision for the future and meetings, when appropriate, to express that vision. Your child's voice matters to others and enhances engagement.

    The role of an advocate or a consultant is to represent the students' needs based on the family's wishes and working collaboratively with the school district. Consider hiring an advocate if you have tried numerous times to reach out to your school, and either your school's not responding, or you feel overwhelmed and want to have somebody else take that off of you.

    If you don't feel comfortable with "advocacy" at first, just share what you know: your own story. Sharing your family's story is powerful and inspiring and may be all that is needed to help convince the gatekeepers of various resources to recognize that the need is there. Ultimately, advocacy is the only thing that will financially save parents because out-of-pocket costs could be tens of thousands of dollars to get the very basic things that their child needs.

    If you think your child has special education needs, the first thing that you need to realize is that you are your child's best advocate. You need to research the law and learn as much as you can learn about advocating for your child's rights. Remember that this is your child, and no matter how many experts the school has on their side of the table, you are the expert on your child.

    The single best resource for families to learn how to advocate for their child and to feel strength in advocating for their child is to find the community of parents who share these concerns and support you, help you and give you hope along the way.

    Seek the counsel of an experienced education law firm. Gain an understanding of your child's educational entitlements and get the guidance you need to secure them.

  5. What else would you like parents raising kids with special needs to know or think about?

    Remember that your child is a child first, and the special health care needs are an add-on. Consider what your child wants and what you hope for in the future. Let that be the guiding star in decisions. Know that those wants and hopes will change over time. Seek out help from trusted professionals and families who have walked a similar path and whose experiences may offer you insights into the future.

    I think that my life can be a teachable moment. And if I'm silent about my struggles and my lessons learned, the crisis that I've been living for a really long time doesn't serve a purpose in my mind. In fact, along those same lines, quite a few parents have come to me to talk about how they can forge a path and create a career out of their circumstances and newfound knowledge. But, whether it is formal or informal work, paid or unpaid, there is always someone out there who needs to hear your story.

    The Individuals with Disabilities Education Act (IDEA) is a law that establishes the basis for special education and makes it a mandate that schools provide it for kids that have needs. More than anything else, the law establishes that all children are entitled to a free and appropriate public education.

    Parents generally aren't aware of these laws that govern what your children are supposed to be receiving in school. We were founded to provide grants for families that needed attorneys to assist them in this special education legal process because there can come a point where the process comes to a halt, and no progress can be made for the family without the support of a special education attorney. We have also been engaged in helping families understand their rights and how to interact with the school district. We've paid particular attention to families with vulnerabilities like English as a second language.

    Forgive yourself and your loved one for not being who you thought you and they should be. I am grateful to have had many more wonderful walks this year than last.

    I have two children with learning disabilities, and the advice I'd like to give to myself and other parents is to take the time to breathe and care for yourself. Being a parent of a child with special needs is filled with constant worry and self-doubt. I have had many sleepless nights wondering if I'm doing enough or doing the right things. This stuff isn't easy.

    Also, I want parents to know that estate planning is not as difficult as they think. A good practitioner will explain the process and work with them to figure out guardians and trustees and how to plan. They don't need to figure that all out before they get started. Plans can be amended and changed, and it is better to have a plan in place than risking no plan in place. We live in uncertain times, and it's never been more important.


Mary Castro Summers
Mary Castro SummersPatient and Family Resource Specialist, Franciscan Children's
Laurel S. Collins
Laurel S. CollinsEducational Advocate and Consultant
Dania Ermentrout
Dania ErmentroutNorth Carolina Medicaid CAP/C Pediatric Case Manager, Footprints Case Management
Christine Lai
Christine LaiCo-Founder & Executive Director, Special Education Legal Fund
Chris Waddell
Chris WaddellCertified Financial Planner, CFP(R)
Valerie Zaloom Buccino
Valerie Zaloom BuccinoAttorney at law. Owner and principal attorney at The Law Office of Valerie Zaloom Buccino, Esq. LLC., The Law Office of Regina Skyer and Associates of Counsel

Resources for Parents of Children With Special Needs

As you develop a plan to secure a financial future for your child, you may find yourself in need of additional help with managing your money. MoneyGeek compiled a valuable resource list to help parents of children with special needs, ranging from training opportunities, support groups and financial assistance programs.

  • Academy of Special Needs Planners: This organization of special needs professionals serves and advises people and families with special needs. It includes information on legal developments and a forum for exchanging best practices and providing information for consumers with special needs.
  • The Arc Center for Future Planning: This guide is for people with intellectual or developmental disabilities to enable them to live as independently as possible after their parent or caregiver is no longer able to care for them.
  • The ARC of the United States: ARC's advocacy efforts are aimed to promote a future of inclusive play, work, worship, community, travel and more for individuals who have intellectual or other disabling conditions. Their website offers information about current activities, links to ARC chapters in all states, and ways to become involved.
  • Center for Parent Information and Resources: This site provides information about critical topics in special education and links to each state's parent training and information center, which are federally funded programs to help parents navigate this complex system.
  • Council of Parent Attorneys and Advocates (COPAA): Composed of families, special education attorneys and advocates across the country, COPAA takes cases that will advance education law for families, provides training for parents to advocate in their processes or to become special education advocates themselves and supports the rights of families with kids in special education.
  • Courageous Parents Network: This network empowers families and providers caring for children with serious illnesses by providing videos, podcasts and printed guides.
  • Family Voices: This family-led organization promotes partnerships at all levels of health care and aims to improve health care services and policies at all levels.
  • Federation for Children with Special Needs: FCSN provides support and help to parents of children with disabilities, their professional partners and their communities.
  • Kids' Waivers: This site provides information on state Medicaid waivers and other programs for children with disabilities or medical needs. It includes program details and state-specific details.
  • National Resource Center for Supported Decision-Making: This center offers resources, guides and toolkits to help families understand options available in the areas of health care, education and guardianship.
  • Organization for Autism Research: This organization provides resources for advocates, families and educators, including information, scholarships for students with autism and research grants.
  • Parent to Parent USA (P2P): P2P oversees a network of parent-to-parent programs across the country that offer emotional support to parents from trained volunteer support parents.
  • Special Education Legal Fund (S.E.L.F.): Created to help families effectively advocate for their child in the special education system, this funding source provides up to $5,000 in grants to cover qualifying special education legal fees for families in Connecticut and education for agencies supporting families with children with special needs.
  • Special Needs Alliance: Long-term financial planning is complex for families, particularly around issues related to a loved one's special needs. This site offers information about government programs, ABLE accounts, special needs trusts, condition-specific organizations and related information.
  • Understood.org: This organization provides a wealth of resources for parents, including template letters to request an individualized education program (IEP) and guidelines for approaching getting support for kids with learning and thinking differences.
About the Author


Deb Gordon is author of "The Health Care Consumer's Manifesto (Praeger 2020)" about consumer markets in health care based on research she conducted as a senior fellow in the Harvard Kennedy School's Mossavar-Rahmani Center for Business and Government. She previously held executive roles in health care companies. She has published in the Harvard Business Review blog, USA Today, RealClear Politics and TheHill. Deb is an Aspen Institute Health Innovators Fellow, an Eisenhower Fellow, a former Boston Business Journal 40-under-40 honoree and a volunteer in MIT's Delta V start-up accelerator. She earned a B.A. in bioethics from Brown University and an MBA with distinction from Harvard Business School.


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