Special Needs Planning: Financial Planning for Long-Term Care – A Guide for Families of Individuals with Special Needs

Importance of long-term financial planning for families with special needs individuals

Financial planning is a critical aspect of every family’s life, but it becomes even more crucial when a family member has special needs. With the additional expenses and complexities of long-term care, families must ensure they have the necessary resources and strategies to support their loved ones throughout their lives. Proper financial planning helps families meet their loved one’s daily needs and helps build a sound financial future.

Challenges faced by families in providing adequate care and support

Families of individuals with special needs often face unique challenges in providing adequate care and support. The cost of specialized therapies, adaptive equipment, educational resources, and housing modifications can be substantial, placing a significant financial burden on families. Additionally, navigating the complex landscape of government assistance programs, insurance options, and legal considerations can be overwhelming for many families.

Overview of the article’s content

This article aims to provide families of special needs individuals with an in-depth guide to financial planning for long-term care. We will discuss various aspects of special needs planning, including understanding long-term care needs, government assistance programs, ABLE accounts, private insurance and funding options, special needs trusts, estate planning considerations, and working with professionals. By equipping families with the necessary knowledge and tools, we aim to empower them to make informed decisions and create a comprehensive financial plan that ensures the well-being of their loved ones with special needs.

Understanding the Long-Term Care Needs of Special Needs Individuals

Types of long-term care Services

Long-term care for individuals with special needs can encompass a wide range of services and support systems, depending on each person’s specific needs and preferences. Some common types of long-term care services include:

  1. In-home care: Personal care, therapy, and support services provided within the individual’s home environment.
  2. Residential care: Group homes or assisted living facilities that cater to individuals with special needs, offering a supportive and structured living environment.
  3. Day programs: Services designed to provide socialization, skill-building, and therapeutic activities during daytime hours.
  4. Respite care: Temporary care and supervision for individuals with special needs, allowing primary caregivers to take a break or attend to other responsibilities.
  5. Medical and therapeutic services: Ongoing medical care, physical therapy, occupational therapy, speech therapy, and other specialized services tailored to the individual’s needs.

Factors affecting the level of care required

The level of care required by individuals with special needs varies greatly depending on several factors, such as:

  1. Severity and type of disability: Different disabilities come with distinct care requirements, and the severity of the disability may also influence the level of support needed.
  2. Age and life stage: As individuals with special needs age, their care needs may evolve, and they may require additional support and services to maintain their quality of life.
  3. Health status: Individuals with chronic health conditions or progressive disabilities may need more intensive care over time.
  4. Family and social support: A strong support network can significantly impact the level of care required by individuals with special needs.

Estimating the costs of long-term care

To effectively plan for long-term care, families must estimate the associated costs, which can be influenced by factors such as the type of care services, geographic location, and inflation. Some resources that can help with cost estimation include:

  1. Local service providers: Contact local agencies and care providers to gather information on their fees and services.
  2. National and regional cost surveys: Research the average costs of various care services in your region to create a baseline for your estimates.
  3. Financial advisors: Consult with a financial advisor experienced in special needs planning to help you create a realistic long-term care budget.
  4. Online cost calculators: Utilize online tools and calculators designed to estimate long-term care costs based on location, age, and care preferences.

Families can develop a comprehensive financial plan that addresses current and future requirements by understanding the long-term care needs of individuals with special needs and estimating the associated costs.

Government Assistance Programs and Benefits

Social Security Disability Insurance (SSDI)

SSDI is a federal insurance program that provides financial assistance to individuals with disabilities who have a sufficient work history and have paid into the Social Security system. SSDI benefits are based on the individual’s earnings record and can provide a monthly income to help cover the costs of living and long-term care.

Supplemental Security Income (SSI)

SSI is a federal program that offers financial assistance to individuals with disabilities who have limited income and resources. SSI benefits help cover basic needs such as food, clothing, and shelter. The eligibility criteria for SSI benefits include the following:

  • Having a qualifying disability.
  • Meeting specific income and asset limits.
  • Being a U.S. citizen or eligible noncitizen.

Medicaid and Medicaid Waiver Programs

Medicaid is a state and federal program that provides healthcare coverage to low-income individuals, including those with disabilities. Medicaid can cover a range of services, such as doctor visits, hospital care, and long-term care services. Medicaid Waiver Programs, also known as Home and Community-Based Services (HCBS) waivers, offer additional services and support to help individuals with disabilities live in their communities rather than institutions.

Other federal and state programs and resources

Various other federal and state programs may provide financial assistance or services to individuals with special needs, including:

  1. Vocational Rehabilitation Programs: These programs help individuals with disabilities prepare for, find, and maintain employment through training, counseling, and job placement services.
  2. Housing Assistance Programs: Programs like the Section 8 Housing Choice Voucher Program can help individuals with special needs secure affordable and accessible housing.
  3. State Developmental Disability Agencies: These agencies provide various services and support for individuals with developmental disabilities and their families, including case management, respite care, and family support services.

Families should research and explore all available government assistance programs and benefits to maximize the financial resources available to support their loved ones with special needs. Applying for these programs can be complex, so seeking guidance from knowledgeable professionals or advocacy organizations is crucial to navigating the application process effectively.

ABLE Accounts

Overview of the ABLE Act and its benefits

The Achieving a Better Life Experience (ABLE) Act, enacted in 2014, created tax-advantaged savings accounts for individuals with disabilities, known as ABLE accounts. These accounts allow people with disabilities and their families to save and invest for current and future expenses without jeopardizing their eligibility for need-based federal assistance programs like Medicaid and Supplemental Security Income (SSI).

Eligibility criteria and contribution limits

  1. Expansion of eligibility under the ABLE Age Adjustment Act: Originally, only individuals who became disabled before the age of 26 were eligible for ABLE accounts. However, the ABLE Age Adjustment Act, included in the omnibus spending bill passed in December, raised the age threshold for the onset of a qualifying disability to 46, expanding eligibility to an estimated six million more people.
  2. Implementation timeline for the new rule: The expanded eligibility will not take effect until January 2026. Families must understand the new rules despite the delay and prepare for implementation.
  3. Contribution limits: Anyone, including family members, friends, and employers, can contribute to an ABLE account up to a maximum of $17,000 for 2023. If a disabled person with an ABLE account works, they can contribute an additional amount from their earnings, up to $13,590 in most states, for an annual total of $30,590.

Investment options and tax advantages

ABLE accounts offer a range of investment options, allowing families to tailor their investment strategies based on their risk tolerance and financial goals. While no federal tax deduction exists for contributing to an ABLE account, earnings and withdrawals for eligible expenses are tax-free. Some states may also offer state tax breaks for contributions.

Tips for preparing for the new eligibility rules in 2026

For those who may qualify for an ABLE account under the new rules, educating themselves about the accounts and how they are used is crucial. While family members cannot save money in the disabled person’s name without jeopardizing government benefits until 2026, they can save independently to contribute the funds once the new rule takes effect. It is also essential to stay informed about any updates or changes in ABLE account regulations.

By understanding the benefits and eligibility criteria of ABLE accounts, families can use this valuable savings tool to secure a more stable financial future for their loved ones with special needs.

Private Insurance and Funding Options

Life Insurance

Life insurance can play a vital role in special needs planning, as it can provide financial support for the care of a special needs individual after the death of a parent or primary caregiver. There are different types of life insurance policies, such as term life and permanent life insurance (including whole life and universal life). Families should consult a financial planner or insurance professional to determine the most suitable policy.

Long-Term Care Insurance

Long-term care insurance can help cover the costs of long-term care services, such as in-home care, assisted living, or nursing home care. These policies can be beneficial for families with special needs members, as they can alleviate the financial burden of care expenses. However, it is essential to note that not all individuals with disabilities will qualify for long-term care insurance, and premiums can be costly. Families should carefully review policy options and weigh the benefits against the costs before purchasing long-term care insurance.

Special Needs Pooled Trusts

Special needs pooled trusts are a type of trust designed specifically for individuals with disabilities, allowing them to pool their resources with others who have similar needs. These trusts are managed by non-profit organizations, which can provide professional trust management and oversight at a lower cost than a traditional special needs trust. Pooled trusts can help preserve eligibility for government benefits while providing additional financial resources for the individual’s care and quality of life.

Education Savings Accounts (ESAs) and 529 College Savings Plans

Education savings accounts and 529 college savings plans can be used to save for a special needs individual’s educational expenses, including tuition, books, and supplies. While these accounts may not directly cover long-term care expenses, they can help reduce the overall financial burden on families by offsetting education costs.

Grants and Financial Assistance Programs

Various non-profit organizations, foundations, and charities offer grants and financial assistance programs for individuals with disabilities and their families. These programs can help cover the costs of medical treatments, therapies, adaptive equipment, and other necessary expenses. Families should research and apply for relevant grants and financial assistance programs to maximize the available financial resources.

By exploring and utilizing a combination of private insurance and funding options, families can create a more comprehensive and robust financial plan for their special needs loved ones, ensuring their long-term care needs are met.

Building a Comprehensive Special Needs Financial Plan

Assemble a team of professionals

When creating a comprehensive special needs financial plan, working with a team of professionals with expertise in various aspects of special needs planning is essential. This team may include the following:

  1. A financial planner with experience in special needs planning
  2. An attorney specializing in special needs trusts and estate planning
  3. An insurance professional familiar with life insurance and long-term care insurance options
  4. A tax advisor to help navigate tax implications and benefits associated with various planning strategies

Assess and prioritize financial goals

Families should work with their team of professionals to assess their financial goals and prioritize them according to their specific needs and circumstances. Some specific financial goals for families with special needs members may include:

  1. Ensuring the long-term care and well-being of the individual with special needs
  2. Saving for educational expenses
  3. Providing financial stability for other family members
  4. Planning for retirement and future financial needs

Develop a customized financial plan

Once the family’s financial goals are identified and prioritized, the professionals can help develop a customized financial plan that addresses current and future needs. This plan should include the following:

  1. An assessment of the family’s current financial situation, including income, expenses, assets, and liabilities
  2. A strategy for funding the long-term care needs of the individual with special needs, utilizing a combination of government assistance programs, insurance products, and private funding options
  3. A comprehensive estate plan, including the creation of a special needs trust, if necessary
  4. Regular reviews and adjustments to the financial plan as the family’s circumstances and needs change over time

Communicate the plan to family members and caregivers

Once the comprehensive special needs financial plan is in place, it is crucial to communicate its details to family members, caregivers, and other relevant individuals. This communication ensures that everyone involved in the care and well-being of the individual with special needs is aware of the financial strategies and can help support the plan’s implementation.

By taking a proactive approach and building a comprehensive special needs financial plan, families can help ensure the long-term care and financial stability of their loved ones with special needs.

Conclusion and Key Takeaways

Creating a comprehensive financial plan for long-term care is crucial for families of special needs individuals. Families can ensure their loved ones receive the necessary care and support by planning and preparing for the future. The key takeaways from this guide include the following:

Understand the unique financial challenges families with special needs members face, including the need for long-term care, government benefits, and preserving eligibility for assistance programs.

Utilize government assistance programs and benefits such as SSDI, SSI, Medicaid, and Medicaid Waiver Programs to maximize available financial resources for long-term care.

Take advantage of ABLE accounts as a valuable savings tool for individuals with disabilities, and be aware of the expanded eligibility rules that will take effect in 2026.

Explore private insurance and funding options, including life insurance, long-term care insurance, special needs pooled trusts, education savings accounts, and grants, to create a more comprehensive financial plan.

Assemble a team of professionals with expertise in special needs planning, assess and prioritize financial goals, and develop a customized financial plan that addresses current and future needs.

Communicate the financial plan to family members and caregivers, ensuring everyone involved in the care and well-being of the individual with special needs is aware of the financial strategies in place.

By following these steps and working with a team of professionals, families can create a robust and comprehensive financial plan for the long-term care needs of their loved ones with special needs.

About Mark Matos

Mark Matos, CFP®, CLU®, ChFC® Achieves Renowned Chartered Advisor in Philanthropy Designation

We are proud to announce that our very own Mark Matos has recently earned the prestigious Chartered Advisor in Philanthropy (CAP®) designation from the American College of Financial Services as an accomplished financial planner with an impressive array of professional designations, including Certified Financial Planner (CFP®), Chartered Life Underwriter (CLU®), and Chartered Financial Consultant (ChFC®). Mark continues to exemplify his commitment to professional development and excellence in service.

About the Chartered Advisor in Philanthropy Designation

The Chartered Advisor in Philanthropy (CAP®) designation is a distinguished recognition awarded to financial professionals who have successfully completed a thorough educational program focused on philanthropic planning and wealth management. This esteemed designation equips professionals with the expertise required to help high-net-worth clients optimize their philanthropic impact while addressing their financial and legacy planning needs.

The Journey to CAP® Designation

To attain the CAP® designation, Mark Matos underwent an extensive curriculum consisting of three in-depth courses, covering subjects such as strategic charitable giving, tax planning, and the legal aspects of philanthropy. The program also necessitated passing a series of exams and adhering to stringent ethical standards established by the American College of Financial Services. By securing this designation, Mark has showcased his dedication to assisting clients in making a significant difference in the world through strategic philanthropic planning.

Mark Matos’ Professional Expertise

With nearly two decades of experience in the financial services industry, Mark Matos has provided comprehensive financial planning and wealth management services to individuals, families, and business owners. His credentials as a CFP®, CLU®, ChFC®, and CAP® demonstrate his unwavering dedication to his clients, as he consistently strives for ongoing education and staying up-to-date with the latest industry trends and best practices.

Mark’s Passion for Philanthropy

In addition to his professional achievements, Mark Matos actively supports various charitable organizations, generously dedicating his time and resources to create a positive impact in his community. By earning the CAP® designation, Mark has elevated his passion for philanthropy, further enhancing his capacity to guide clients in their philanthropic endeavors and establish a lasting impact.

Mark Matos’ attainment of the Chartered Advisor in Philanthropy designation reflects his dedication to professional excellence and his commitment to helping clients realize their philanthropic aspirations. With his comprehensive knowledge and expertise in financial planning, wealth management, and now philanthropy, Mark is ideally positioned to help clients create an enduring legacy and make a meaningful difference in the world.

Lifelong Learning Financial Planning

As an experienced financial advisor, I understand the importance of continuing education and professional development. In fact, I have already obtained three significant credentials: CERTIFIED FINANCIAL PLANNER™ (CFP®), Chartered Life Underwriter® (CLU®), and Chartered Financial Consultant® (ChFC®). These designations have provided me with a broad knowledge base and a set of skills that have enabled me to serve my clients with expertise and care. I’m a believer in Lifelong learning in financial planning.

Despite having achieved these credentials, I recognize the importance of remaining committed to lifelong learning. This is why I have recently completed all the coursework and final exams in my graduate-level courses for the Chartered Advisor in Philanthropy® (CAP®) designation, and I am expecting to be awarded the credential on May 1st, 2023. The CAP® curriculum covers a wide range of topics, including charitable giving strategies, tax law, and the ethical considerations involved in philanthropic planning. I believe that this knowledge will allow me to better serve clients who are looking to make a difference in the world through charitable giving.

In addition to pursuing the CAP® designation, I am also continuing to work towards three other credentials: Accredited Estate Planner® (AEP®), Retirement Income Certified Professional® (RICP®), and Chartered Special Needs Consultant® (ChSNC®). These designations will provide me with additional expertise in key areas of financial planning, including estate planning, retirement income planning, and planning for those with disabilities. By obtaining these designations, I will be better equipped to help my clients achieve their financial goals and secure their financial futures.

I am committed to ongoing education and professional development because I believe that it is essential to provide the highest level of service to my clients. The financial world is constantly changing, and it is crucial to stay up-to-date on the latest trends, regulations, and strategies. By continuing to learn and grow as a financial advisor, I am better able to provide my clients with the knowledge, tools, and guidance they need to make informed financial decisions and achieve their goals.

As an experienced financial advisor who has already obtained the CFP®, CLU®, and ChFC® credentials, I remain committed to lifelong learning. I am proud to have completed all the coursework and final exams for the Chartered Advisor in Philanthropy® designation and to be working towards the AEP®, RICP®, and ChSNC® designations. These credentials will provide me with additional knowledge and skills that will allow me to better serve my clients and help them achieve their financial goals.

About Mark Matos

Accredited Estate Planner

What is an Accredited Estate Planner® (AEP®)?

An Accredited Estate Planner® (AEP®) is a professional designation awarded to those who have completed extensive education and training in estate planning. This certification is provided by the National Association of Estate Planners & Councils (NAEPC), a non-profit organization dedicated to improving estate planning by educating estate planning professionals and the general public.

The AEP® program of study covers a broad range of estate planning subjects, including estate and gift tax planning, asset protection, business succession planning, retirement planning, and charitable planning. To earn the AEP® credential, an individual must have a minimum of five years of experience in estate planning and complete 30 hours of continuing education every two years. The individual must also adhere to a strict code of ethics and professional standards.

The AEP® designation is highly respected in the financial planning industry and is recognized as a sign of an individual’s expertise in estate planning. An AEP® may be a financial planner, attorney, accountant, insurance professional, trust officer, or another professional who provides estate planning services.

An AEP® can provide clients with comprehensive estate planning services, including developing a plan to transfer assets to heirs while minimizing tax liabilities, creating trusts to manage assets, providing for long-term care, and helping with business succession planning. An AEP® can also assist with charitable giving and philanthropy, providing guidance on setting up charitable trusts, foundations, and other vehicles for giving.

For those interested in pursuing a career in estate planning, the AEP® designation can be a valuable credential. The program of study provides a comprehensive education in estate planning, and the AEP® designation can help individuals stand out in a competitive field.

An Accredited Estate Planner® is a professional who has completed extensive education and training in estate planning. The AEP® designation is highly respected in the financial planning industry and is recognized as a sign of expertise in estate planning. An AEP® can provide clients with comprehensive estate planning services and can also be a valuable credential for those interested in pursuing a career in estate planning.

An accredited estate planner is an individual who specializes in the planning and management of estates. Estate planning involves a complex set of legal and financial considerations, and an accredited estate planner can help clients navigate this process and achieve their desired outcomes. In this article, we will explore the ways in which an accredited estate planner can help clients.

First and foremost, an accredited estate planner can help clients create a comprehensive estate plan. This involves working with the client to identify their goals and objectives for their estate and then developing a plan to achieve those goals. The estate plan may include a will, trusts, powers of attorney, and other legal documents that are designed to manage and distribute the client’s assets in a manner that is consistent with their wishes.

One of the primary benefits of working with an accredited estate planner is that they can help clients minimize their tax liabilities. Estate taxes can be a significant burden on an estate, and an accredited estate planner can help clients structure their estates in a way that minimizes their tax liabilities. This may involve setting up trusts, creating charitable foundations, or taking advantage of other tax planning strategies.

Another important benefit of working with an accredited estate planner is that they can help clients manage their assets during their lifetime. This includes helping clients develop a comprehensive investment strategy that is designed to achieve their financial goals. The estate planner can also help the client manage their assets in a way that minimizes their risk exposure and that ensures that their assets are protected in the event of a market downturn or other economic crisis.

In addition to helping clients manage their assets, an accredited estate planner can also help clients plan for their long-term care needs. This may involve setting up a trust or other financial vehicle that is designed to provide for the client’s long-term care needs. The estate planner can also help the client evaluate their options for long-term care insurance and can help them select a policy that provides adequate coverage.

One of the most important roles that an accredited estate planner can play is to help clients ensure that their wishes are carried out after they pass away. This involves working with the client to develop a plan for the distribution of their assets and then helping the client create legal documents that ensure that their wishes are carried out. This may include setting up trusts, creating charitable foundations, or making other arrangements that are designed to ensure that the client’s assets are distributed in a manner that is consistent with their wishes.

Finally, an accredited estate planner can provide support to clients and their families. Estate planning can be a complex and stressful process, and working with an experienced and knowledgeable estate planner can help clients feel confident that their affairs are in order. This can be particularly important for older clients, who may be concerned about their legacy and the impact that their estate will have on their family members.

In conclusion, an accredited estate planner can provide a wide range of benefits to clients.These benefits include helping clients minimize their tax liabilities, manage their assets, plan for their long-term care needs, ensure that their wishes are carried out after they pass away, and provide support to clients and their families. If you are interested in working with an accredited estate planner, it is important to do your research and select a professional who has the experience and expertise needed to help you achieve your goals.

Chartered Special Needs Consultant

What is a Chartered Special Needs Consultant® (ChSNC®)?

A Chartered Special Needs Consultant (ChSNC®) is a specialist with particular knowledge and skills in financial planning for people with disabilities and their families. The American College of Financial Services, a non-profit educational organization focused on delivering financial education and training for professionals, offers this credential.

Candidates must finish a rigorous course of study that includes a variety of issues relating to financial planning for persons with disabilities, such as special needs trusts, government assistance, estate planning, and tax planning, in order to become chartered special needs consultants. Candidates must not only complete the needed coursework but also pass a comprehensive examination to demonstrate their understanding of the content.

A Chartered Special Needs Consultant’s primary function is to assist families in planning for the long-term financial stability of loved ones with disabilities. Setting up a special needs trust, which is a legal framework that permits monies to be maintained on behalf of a disabled person without endangering their eligibility for government benefits, is one option. A specialized consultant can also assist families in navigating the complicated laws and regulations that govern government programs like Medicaid and Social Security Disability Insurance. (SSDI).

Another important role of a Chartered Special Needs Consultant® is to help families plan for the future care and support of their loved ones with disabilities. This can involve developing a comprehensive care plan that takes into account the individual’s unique needs and preferences, as well as identifying potential sources of support such as community resources, government programs, and private insurance.

A ChSNC® may collaborate with other professionals such as attorneys, accountants, and financial planners in addition to working with families to ensure that all parts of a client’s financial plan are coordinated and aligned with their overall goals and objectives.

A Chartered Special Needs Consultant® is a valuable resource for families and individuals with disabilities who need specialized financial planning advice and support. By working with a qualified professional, families can gain confidence knowing that they have a comprehensive plan in place to ensure the long-term financial independence and well-being of their loved ones with disabilities.

As a client with disabilities, there are unique financial planning considerations that need to be addressed by a competent professional. Financial planning for individuals with disabilities requires a thorough understanding of the various benefits, programs, and resources available to them. Financial planning should also address the unique circumstances and challenges that are often associated with disabilities, such as medical expenses, education costs, and long-term care.

Supplemental Security Income (SSI) is a federal program that provides financial assistance to individuals who have limited income and resources. SSI benefits can be used to cover the costs of food, clothing, and shelter. Medicaid is a state-run program that provides healthcare coverage to individuals with low income and limited resources. Social Security Disability Insurance (SSDI) provides financial assistance to individuals who are unable to work due to a disability.

One of the key considerations in financial planning for disabled clients is the cost of medical care. Individuals with disabilities often require specialized medical care and treatment, which can be expensive. Medical expenses can include doctor visits, hospital stays, surgeries, and medication. Clients with disabilities should work with a financial planner to develop a plan for paying for these expenses. This may include setting up a special needs trust or utilizing government benefits to cover the costs of medical care.

Another important consideration in financial planning for disabled clients is education. Many individuals with disabilities require specialized education programs and resources. These may include special education programs, private schools, or therapy sessions. Disabiled clients should work with a financial planner to develop a plan for paying for these education expenses. This may include setting up a 529 plan or utilizing government benefits to cover the costs of education.

Long-term care is also an important consideration in financial planning for clients with disabilities. Many individuals with disabilities require long-term care, either in a residential facility or in the home. Clients who have disabilities should work with a financial planner to develop a plan for paying for long-term care expenses. This may include setting up a special needs trust or utilizing government benefits to cover the costs of long-term care.

Finally, it is important for clients with disabilities to have a comprehensive estate plan in place. This includes a will, a trust, and a power of attorney. A will ensures that the client’s assets are distributed according to their wishes after their death. A trust can be used to manage assets and provide for the needs of the individual with disabilities after the client’s death. A power of attorney allows the client to appoint someone to make financial and healthcare decisions on their behalf if they are unable to do so.

Financial planning for clients with disabilities requires a thorough understanding of the various benefits, programs, and resources available to them. It also requires a deep understanding of the unique circumstances and challenges that are often associated with lifelong disabilities. Clients who have disabilities should work with a financial planner who has experience working with individuals who have disabilities. The financial planner can help the client navigate the various benefits and programs available to them, develop a long-term financial plan that takes into account the unique needs and circumstances of the individual, and help the client set up a comprehensive estate