Government Benefits

Understanding and accessing the government benefits available to your child may at times be both complex and confusing, but for almost all families, a totally worthwhile endeavor. 

INTRODUCTION

Government benefits

It is likely you will need to combine your own personal resources with government benefit resources to fund your child's lifetime needs.  Even if your child does not need or receive government benefits now, having access to those benefits is key in funding a lifetime of supports and services for them. 

Understanding and accessing the government benefits available to your child may at times be both complex and confusing, but for almost all families, a totally worthwhile endeavor. The more information you gather, the more knowledge you will gain and the more options you will find to create a full life for your child. 

ABOUT

Understanding Government Benefits

Government benefits can help families by providing basic income through SSI, SSDI, and assistance via SNAP (food stamps), premium reimbursement for private healthcare, AFC (*remember, cannot go to guardian), and PCA. 

Government benefits may be divided into 2 main categories: entitlement benefits and non-entitlement benefits. 

Entitlement benefits are those your child is legally authorized to receive if they meet certain eligibility criteria. They are funded by the Federal government and are mandatory. These benefits include:

  • Medicare
  • Medicaid
  • Group Adult Foster Care (AFC) - under Medicaid
  • Social Security Disability Insurance (SSDI)
  • Supplemental Security Income (SSI)
  • Federal and Military Benefits
  • Veteran's Benefits
  • Railroad Retirement Benefits
  • Civil Service Retirement Benefits

Non-entitlement benefits, are those that your child is not necessarily authorized to receive but may receive if they meet eligibility requirements AND if funding is available. Non-entitlement benefits may be funded through a combination of mandatory and discretionary spending.  Discretionary spending programs generally are established through authorization laws, but the annual appropriations process determines the extent to which those programs will actually be funded, if at all. These benefits include:

  • Housing subsidy (under Housing and Urban Development-HUD)
  • Rental subsidy (under Section 8 housing -HUD)
  • Flexible family supports
  • Residential supports
  • Transportation supports
  • Adult day service programs
  • Supported employment services

Note: This summary is for illustrative purposes only and does not imply eligibility or availability of any services or supports. Certain benefits vary by state 

Entitlement Benefits 

Entitlement benefits may be further categorized into Contributory entitlements/programs and Needs-based entitlements.

Contributory entitlements

Contributory entitlements are those to which a parent or child has "contributed", often through their federal tax payments or direct co-payments. Contributory entitlements include special education services, Social Security Disability Income (SSDI) and Medicare. 

A couple tips about contributory entitlements:

  • Federal laws governing special education provide that children are entitled to a fair and appropriate public education (FAPE) in the least restrictive environment (LRE). Services can begin in infancy if your child is eligible for Early Intervention services. It is important to access your local education agencies as they determine the process for eligibility for special education services. 
  • Although Social Security is known best for providing benefits to retirees after the age of 65, most children and adults with disabilities also qualify for Social Security benefits through one of two Social Security income benefit programs: SSDI or SSI. Additional information may be found at www.ssa.gov.

 

Needs-based entitlements 

Needs-based entitlements are funded by the Federal government (but often administered by the state) and once a person is deemed eligible, the support is provided. Needs-based entitlements include SSI, Medicaid, Premium reimbursement, Adult/Family foster care (AFC), Personal Care Assistant (PCA),  a HUD housing subsidy and can include food stamps (SNAP). 

A couple of tips about needs-based entitlements:. 

  • Be sure there is less than $2000 in your child’s name before applying for government benefits.
  • Apply for Supplemental Security Income (SSI ) benefits for your child. 

 Obtaining and maintaining eligibility for SSI and/or Medicaid is often the most relevant consideration for accessing government benefitsOnce a person is deemed eligible, the support is provided. These programs are federally funded but often state administered. You can likely count on your child receiving SSI, as long as their eligibility is maintained.  

  • Apply for MassHealth premium reimbursement.
  • Apply for Housing Assistance.
  • Review your estate planning documents.
  • Consult with your professional team- your financial planner, attorney, accountant.

Non-entitlement benefits

Non-entitlement benefits, are those that your child is not necessarily authorized to receive but may receive if they meet eligibility requirements AND if funding is available. Non-entitlement benefits may be funded through a combination of mandatory and discretionary spending.  Discretionary spending programs generally are established through authorization laws, but the annual appropriations process determines the extent to which those programs will actually be funded, if at all. These benefits include:

  • Housing subsidy (under Housing and Urban Development-HUD)
  • Rental subsidy (under Section 8 housing -HUD)
  • Flexible family supports
  • Residential supports
  • Transportation supports
  • Adult day service programs
  • Supported employment services

Note: This summary is for illustrative purposes only and does not imply eligibility or availability of any services or supports. Certain benefits vary by state 

Planning pointer

 ADVOCACY MATTERS

It is important to remember that there is a cost to these services funded by taxpayers. Consequently, our national and state budgets are affected by entitlements, and entitlements are affected by national debt and spending decisions. Every year, Congress and state legislatures are required to find a way to fund the budget with adequate money to pay for the entitlement programs. And every year, families must continue to be diligent advocates. 

Planning Pointer

Coordinate Guardianship and Medicaid

If you also have the ability to access government benefits to be the adult family care provider under Medicaid provisions, you will not be able to be your child’s guardian. Careful consideration should be given when choosing the parent to serve as guardian while the other parent serves as the Medicaid provider.

STRATEGIES

Where to begin?

It is a known fact that navigating the maze of government benefit services and systems can be very difficult—even for the most experienced and educated family. What makes it more complicated is that the needs of your child may change over time and will lead you across various government agencies and departments. 

Knowing which benefits to focus on at different stages of your child’s life is helpful . Below are specific areas of focus and questions to ask yourself at each of the five stages of planning. 

Stage I: Early Childhood (Birth to Age 3) 

What is important to keep in mind at this stage is that parenting a child with special needs is entirely new to you, You likely do not even know what you do not know. 

  • Has your medical practitioner referred you to Early iIntervention services? If not, ask for a referral immediately. 
  • Do you know which government agency (or agencies) your child will be receiving services and/or resources from? This is often tied to their diagnosis. 
  • Does your child have multiple disabilities? If so, this will increase the likelihood of having to deal with several government agencies. Identify and begin to work with the agency that has the largest budget first.
  • Does your local government provide services directly, or do they hire local agencies to provide such services? 
  • Have you explored your family’s eligibility for government benefits? Based upon your family’s total financial income and assets, you may be eligible for financial assistance including SSI and health insurance benefits (Medicaid benefits).These benefits often require low income or a limit on assets in your name. 

 Stage II: Transitioning Into the School System (Age 3–15) 

If your child qualifies for special education services, they are entitled to receive those services beginning at age 3. Your role is to be your child’s advocate to maximize those entitlements through the Individualized Education Plan program (IEP)  process. 

  • Do you have a good understanding of your child’s entitlements for education? Knowing your rights and responsibilities as a parent is key. Contact your state’s department of education to get a clear understanding of this information and to keep up with any changes.
  • Have you explored additional services available to help meet your child’s needs, including any Medicare or Medicaid services that you, or they, are eligible to receive? This may include home and/or school-based therapies. These therapies may be essential for your child and you may want to buy into your state’s Medicaid program to obtain these services if your family doesn’t financially qualify for Medicaid in your state.  There are thirty-three (33) Medicaid expansion states where the buy-in should be available.ii  
  • Be aware that your child may be able to receive significant government benefits in the future and take steps knowing you want to keep savings in their name below $2000. 

Stage III: Transitioning Into High School and Government Benefits (Age 16–21) 

The key planning issue at this stage is to maximize your child’s eligibility to receive and maintain government benefits at age 18. If they are eligible for SSI, then they will also be eligible for Medicaid services. These are two key components that can help provide for current and future needs for food, shelter, and health care. 

  • Have you made certain that your child will not be disqualified for government benefits because of assets in their name? Before applying for SSI, make certain that all savings bonds, bank accounts, investments, assets, or custodial accounts are not placed in their name directly, including those set up by relatives and friends. 
  • In your and your family's future plans, make sure that your child will not receive gifts or future inheritances directly in their name.  If the total assets in their name exceed $2,000, their eligibility for SSI benefits will be compromised. 
  • If your child's assets exceed the $2,000 threshold, you should develop a strategy to spend down the assets, reimburse your out- of- pocket expenses, or transfer them to an ABLE Account (up to $15,000 per year). Ithe amount is greater than the limit for ABLE Accounts, then consider using a first-party special needs trust. 
  • If one parent is disabled, retired, or deceased, your children might be eligible to receive SSDI benefits based upon that parent’s Social Security work record (see www.ssa.gov for details). 
  • If you were previously denied services or supports from a government agency, find out why. What can you do, if anything, to help with your child’s eligibility?
  • There is a special Medicaid benefit waiver, also known as the “Katie Beckett” Waiver, that may allow your child to receive Medicaid services  without counting their parents’ income or resources. This benefit is primarily for more medically complex children to be able to meet their needs while still living at home with the family. 

Stage IV: : Transitioning Into Adult Services (Age 22 and Beyond) 

When your child reached age 18, you were able to determine whether they qualified for government benefits such as SSI and Medicaid. Upon turning age 22 (or age 21 or 26 in some states), individuals are no longer entitled to receive benefits; your adult child now needs to be “eligible” to receive benefits for residential, vocational, and transportation supports.  Your advocacy to support your child's independence and to ensure funding from your state's legislature is critically important. 

  • Do you understand the process your state uses in prioritizing potential recipients of services? Have you been told that your child is on a “waiting list”or not a priority for residential placement? Because the demand for services is greater than the government resources available, most states have established a priority list of those eligible to receive services. Knowing where your family member stands for services will be valuable in knowing how to plan. Your state advocacy support organization or other family support agency can be a good resource for information.  
  • If government-provided residential services are not the most appropriate for your child, you can no longer wait, and you have resources available, you should explore many of the private pay residential models throughout the country. You may be able to use your child’s funding from government benefits such as SSI, Medicaid, housing assistance, and other government benefits, along with your own resources to put together an appropriate supported living arrangement. The success of a private pay or copay option depends upon finding the right person and/or provider agency to help coordinate these resources.  Frequently finding the right people to provide the supports is the most challenging piece. 
  • Are you concerned that your child’s unique abilities are not supported in the residential model provided by the state program? Work with the  coordinator(s) and staff to develop a program around your child’s abilities and needs rather than expecting your child to conform to an existing program, which may not support them fully.  The key is to create the program around your child; not fit your child into a predetermined program. 

Stage V: Transitioning to the Next Generation (Implementing Your Team to Carry On) 

Your planning will need to encompass tools and strategies to protect your child’s eligibility for benefits to last throughout their lifetime, even after you are gone. 

  • Upon the retirement, disability, or death of a parent, have you applied for SSDI for your child with a disability? The SSDI program pays benefits to adults who have a disability that began before they became 22 years old. The SSDI benefit is considered a Childhood Disability Benefit (CDB) because it is paid on a parent’s Social Security earnings record. A parent must be receiving Social Security retirement or disability benefits or have died after working long enough to receive Social Security benefits, for the adult child to receive benefits (see www.ssa.gov for details). 
  • Many individuals that qualify for government benefits by definition maybe gainfully employed and currently not eligible for benefits. If this is the case, you should be defensive in your planning, because at some point in the future your child may lose employment or become less independent, and may need the support of government programs. 
  • Make sure family members and friends understand the importance of protecting your child’s eligibility for government benefits. They may incorporate proper estate planning tools, such as a special needs trust and/or ABLE account, in their own plans rather than a direct gift or inheritance to your child. 
  • Identify and provide a clear summary of your child’s current and potential benefits to future caregivers. There may be benefits for health care or pension income from a former employer worth noting. These should be included in your Letter of Intent.    

Where to find information

Visit the SSA website. It helps you learn about applying for Social Security or SSI and Medicare. On the menu, select:
  • Disability to look into Social Security.
  • Supplemental Security Income to learn about Supplemental Security Income.
  • Medicare to learn about health insurance.

Visit the Medicare website for information about health care insurance, drug plans, and other relevant information.
 
Visit the Medicaid website for current information about Medicaid benefits.
 
Visit the U.S. Department of Education website for specifics about education services and information.
 
Visit the Housing and Urban Development website  for more information about housing vouchers, subsidies, and grants, or use this site to find your local housing authority agency.
 
Visit the State Health Access Data Assistance Center for an overview of the premium assistance/reimbursement program and a listing of various state programs.

Key Actions for Parents

Tips for accessing entitlement and non-entitlement benefits from our book, The Special Needs Planning Guide.

Knowing and accessing government benefits for your child is key in funding a lifetime of supports and services for them. Once you have obtained any government benefits, make sure to incorporate your financial and estate planning to protect their future eligibility. Even if your child does not need or receive government benefits now, your planning should still provide a safety net for future eligibility.

For entitlement benefits:

  • Do not save more than $2,000 in your child’s name.
  • Watch guardianship and eligibility for AFC or the equivalent Medicaid program in your state.
  • Know when to apply for SSI and when not to apply.
  • Know that your child may switch from receiving SSI to receiving SSDI based on the parent’s retirement, death, or disability.
  • If your application for benefits is denied, you may want to re-apply should there be a change in your child's needs or the eligibility criteria.

For non-entitlement benefits (state-funded):

  • Identify the state agency in your child’s transition plan in the IEP.
  • Know your child’s prioritization for services and supports.
  • Know what services your child may be eligible to receive from the state agency.
  • Begin to develop a relationship with your child’s support coordinator (or case manager).

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How to Identify, Maximize and Protect Eligibility for Government Benefits

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Sources: 

  • The Special Needs Planning Guide, How to Prepare for Every Stage of Your Child's Life, Haddad/Nadworny, 2021,  with a special thank you to contributing author Leo V. Sarkissian, MASW, LICSW, Executive Director, The Arc of Massachusetts

     

Affinia Financial Group conducts business under the Special Needs Financial Planning name. Advisory services offered through Affinia Financial Group, LLC,  a registered investment advisor. 

Content in this material is for general information only and not intended to provide specific advice or recommendations for any individual, nor intended to be a substitute for specific individualized tax or legal advice. We suggest that you discuss your specific situation with a qualified tax or legal advisor. There is no assurance that the techniques and strategies discussed are suitable for all individuals or will yield positive outcomes. 

The experiences described here may not be representative of any future experience of our clients, nor considered a recommendation of the advisor's services or abilities or indicate a favorable client experience. Individual results will vary.