Do I Qualify For Disability With Pervasive Developmental Disorder (PDD-NOS)

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PDD-NOS stands for Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). PDD-NOS was one of several autism diagnoses that are now included in the overall diagnosis of autism spectrum disorder (ASD) with the publication of the DSM-V.

In the DSM-IV, the essential features of PDD-NOS are severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills; and stereotyped behaviors, interests, and activities. The criteria for Autistic Disorder are not met because of late age onset; atypical and/or sub- threshold symptomotology are present.

You may meet the criteria for disability if you meet the requirements of one of Social Security’s official disability listings.  Social Security publishes the criteria for a number of common illnesses to qualify for disability, and if you meet the criteria for your particular condition, you automatically qualify for benefits.

The listing for Autism Spectrum Disorders for adults is 12.10:

12.10 Autism spectrum disorder (see 12.00B8), satisfied by A and B:

  1. Medical documentation of both of the following:
    1. Qualitative deficits in verbal communication, nonverbal communication, and social interaction; and
    2. Significantly restricted, repetitive patterns of behavior, interests, or activities.


  1. Extreme limitation of one, or marked limitation of two, of the following areas of mental functioning (see 12.00F):
    1. Understand, remember, or apply information (see 12.00E1).
    2. Interact with others (see 12.00E2).
    3. Concentrate, persist, or maintain pace (see 12.00E3).
    4. Adapt or manage oneself (see 12.00E4).

The listing for Autism Spectrum Disorders for children is 112.10:

112.10 Autism spectrum disorder (see 112.00B8), for children age 3 to attainment of age 18), satisfied by A and B:

  1. Medical documentation of both of the following:
    1. Qualitative deficits in verbal communication, nonverbal communication, and social interaction; and
    2. Significantly restricted, repetitive patterns of behavior, interests, or activities.


  1. Extreme limitation of one, or marked limitation of two, of the following areas of mental functioning (see 112.00F):
    1. Understand, remember, or apply information (see 112.00E1).
    2. Interact with others (see 112.00E2).
    3. Concentrate, persist, or maintain pace (see 112.00E3).
    4. Adapt or manage oneself (see 112.00E4).

If you do not meet the listing, you may still qualify for disability benefits if you are not performing substantial gainful activity and if the impairment prevents you from doing your past relevant work or other work that exists in significant numbers in the national economy.

For children, to functionally equal the listings, an impairment(s) must be of listing-level severity; that is, it must result in “marked” limitations in two domains of functioning or an “extreme” limitation in one domain.  Domains are broad areas of functioning intended to capture all of what a child can or cannot do. SSA uses the following six domains:

  1. Acquiring and using information,
  2. Attending and completing tasks,
  3. Interacting and relating with others,
  4. Moving about and manipulating objects,
  5. Caring for yourself, and
  6. Health and physical well-being.

Please call our office at (508) 421-4610 if you have any questions about applying for disability with Pervasive Developmental Disorder (PDD-NOS) or the application process in general.


How Do You Apply For Social Security Disablity?

The basic steps you need to know when applying for Social Security Disability

How Does the SSA Calculate Cost of Living Increases?

Next year, Social Security recipients will see a 2 percent raise in benefits, the largest increase in six years.

For Social Security Disability Insurance (SSDI) recipients, the average monthly benefit will go up from $1,170 to $1,180, not including people who are blind, for whom the monthly rate is significantly higher. For Supplemental Security Income (SSI) beneficiaries, the average monthly benefit will rise from $735 to $750.

But how does the Social Security Administration (SSA) calculate its annual cost of living adjustment (COLA)?

The answer is a seemingly arbitrary measure of inflation, long criticized by advocates for the elderly and people with disabilities as unrepresentative of the spending patterns of Social Security beneficiaries.

Each month, the Bureau of Labor Statistics (BLS) publishes a variety of different measures of inflation, each of which are tailored to reflect the impact of price changes on different population groups.

The SSA, when calculating its annual COLA, relies on a measure of inflation known as Consumer Price Index for Urban Wage Earners and Clerical Workers (CPI-W). Adopted by the SSA in 1975, this Index attempts to measure inflation based on the spending patterns of people living in 1) urban households, 2) for whom at least half of the household’s income comes from clerical or wage occupations, and 3) one of the household earners must have been employed for at least 37 weeks during the previous 12 months.

According to the BLS, only about 28 percent of the total U.S. population falls into households that meet this criteria. As very few of these households contain individuals receiving Social Security benefits, it is unclear why the CPI-W is the SSA’s preferred measure of inflation. Many advocates contend that the CPI-W doesn’t rise quickly enough to reflect the spending patterns of SSI and SSDI beneficiaries.

Ironically, the BLS has constructed – but does not yet use for the COLA – a separate index for measuring inflation for the elderly that tends to record higher rates of inflation, primarily due to increased medical costs. As such, this index also would likely better reflect the economic realities for SSI and SSDI beneficiaries. The BLS, however, warns that this separate index for the elderly is currently experimental, and should be treated with caution.

Despite widespread criticism of the SSA’s reliance on the CPI-W, most legislation in recent years has been focused on pushing the SSA to adopt an even stricter form of inflation measurement.

The Obama Administration, in both 2013 and 2014, and numerous Republican budget proposals, including the most recent one in the House, have pushed for a new measure known as the “chained CPI.” This measure attempts to calculate how people compensate for increased costs via substitution, i.e., buying one product instead of another. Annual inflation is typically measured as between 0.25 to 0.35 percent less under this measure, according to the New Republic.

The Social Security COLA went up just 0.3 percent for 2017 and not at all for 2016. Next year’s increase is primarily the result of recent boosts in energy and food prices.

For more on how the SSA calculates COLAs, click here.

Click here for frequently asked questions about the CPI-W.

Annual Contribution Limit for ABLE Accounts to Rise in 2018

The amount that can be deposited in an ABLE account each year without jeopardizing public benefits will rise from the current $14,000 to $15,000 starting in 2018.

The increase makes these accounts that much more attractive as a way for people with disabilities to shield gifts or income or even use as an alternative to a special needs trust in the right circumstances. The amount that can be deposited in an ABLE account is tied to the federal gift tax exclusion, which will rise from $14,000 to $15,000 in 2018 due to inflation.

Created by Congress via the passage of the Achieving a Better Life Experience (ABLE) Act in 2014 and modeled after popular 529 college savings accounts, ABLE accounts allow people with disabilities and their families to save up to $100,00.00 in accounts for disability related expenses without jeopardizing their eligibility for Medicaid, Supplemental Security Income (SSI), and other government benefits.  Funds in the tax-free savings accounts can be used to pay for qualifying expenses such as the costs of treating the disability or for education, housing and health care, among other things. ABLE accounts may be opened by anyone with a disability as long as the disability began before the person turned 26.

Like the 529 savings plans on which they are patterned, ABLE programs are set up by the individual states, although so far most state plans are welcoming the participation of residents of any state.  Twenty-nine states and the District of Columbia now have ABLE programs, according to the ABLE Resource Center.

Thank you!

Thank you to the special needs department at the JCC Springfield for the opportunity to speak about special needs planning.  I appreciate the invitation and opportunity to present.  We discussed special needs trusts, Social Security Disability, ABLE accounts, guardianships, financial strategies and other special needs planning topics.  Thank you to the many families that attended and all of the great questions.  Thank  you again for hosting our workshop!

Three Big Differences Between SSI and SSDI

Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) are both federal programs that provide cash payments to people who meet the federal definition of “disabled.”  But the similarities between the two programs end there.  Here are the three main differences between them.

SSI Is a Means-Tested Program, SSDI Is an Entitlement Program

Although both SSI and SSDI are administered by the Social Security Administration, the two programs have vastly different financial requirements.  SSI is designed to meet the basic needs of elderly, blind and disabled individuals who would otherwise have a hard time paying for food and shelter.  Because SSI is narrowly tailored for this particular set of people, it has a very strict set of financial requirements, making it what is known as a “means-tested” benefit.

SSDI, by contrast, is an entitlement program that is typically available to any person who has paid into the Social Security system for at least ten years, regardless of his current income and assets.  (Younger beneficiaries and disabled adult children of retired or deceased workers may have to meet different requirements.)  In theory, all qualified workers are potential SSDI recipients, even high-income earners.

SSI Beneficiaries Typically Receive Medicaid, SSDI Provides Access to Medicare

In most cases, a person who receives SSI immediately qualifies for Medicaid benefits.  Because Medicaid is a joint state and federal health care program that typically provides very comprehensive coverage for its beneficiaries, many people may apply for SSI primarily because of the health care that comes with it.

On the other hand, SSDI beneficiaries are eligible to receive Medicare two years after they are deemed eligible for SSDI benefits.  Medicare is a federal health insurance program that covers routine hospital services and most but not all primary medical care.  Medicare is not as comprehensive as Medicaid, and many Medicare beneficiaries purchase what are known as private “Medigap” policies to fill in the holes in their primary Medicare coverage.

The Financial Benefits Can Be Very Different

Finally, SSI and SSDI benefits vary widely when it comes to the amount of money provided.  In 2018, the federal SSI payment standard will be $750 per month for an individual (with most states adding a small supplementary payment), while the average SSDI payment for 2017 is $1,171 a month.  Since SSDI is based on the beneficiary’s earnings record, some SSDI recipients can receive much more than this.  In addition, SSI benefits are reduced by any other income received by an SSI beneficiary, so many SSI recipients will receive less than the $750 payment standard.  In most cases, if a person receives an SSDI benefit that is higher than the maximum SSI payment, she won’t be eligible for SSI at all.

Individuals With Disabilities Education Act (IDEA) – Special Education Law

The Individuals with Disabilities Education Act (IDEA) is arguably the most important federal law for children with special needs.  The law mandates that all eligible children and youth ages 3 through 21 years old be provided with a “free and appropriate public education” in the “least restrictive environment.”

To be eligible for services under the IDEA, a child must be identified as having a disability. A child is considered to have a disability if she has been diagnosed with:

  • Brain injury or mental impairment
  • Speech or language impairment
  • Hearing impairment including deafness
  • Visual impairment including blindness
  • Serious emotional issue
  • Orthopedic impairment
  • Autism
  • Identifiable Learning disability
  • Other serious health issues

There are approximately 6.6 million children and youth with disabilities in public schools across the United States, which is 13 percent of all public school students, according to the National Center for Education Statistics’ 2014-15 data.  Before the IDEA was enacted in 1975 as the Education for All Handicapped Children Act (EHA), only one out of five children with disabilities went to public schools.  Many lived in state institutions where they received little or no education.

The Law’s Key Components

There are several key components to the IDEA that every parent should know about.  They are: a free and appropriate public education (FAPE), least restrictive environment (LRE), and individual education program (IEP).

FAPE: The IDEA guarantees every child a free and appropriate public education. States must offer special education and related services to children with disabilities at no cost to the families in a public school setting (whenever possible) that meets the state’s educational standards and conforms to the child’s individual education plan.  If a public school cannot offer this, it will offer an alternative, such as the network of educational collaboratives or possibly a private institution, and the government will pay for it.

The U.S. Supreme Court recently expanded the meaning of “appropriate” in the case Endrew F. vs. Douglas County School District, holding that a “minimal educational benefit is not sufficient.”

LRE: Least restrictive environment refers to the educational setting. The IDEA says that “to the maximum extent appropriate” children with disabilities must be educated in a typical classroom with typical peers. Children may be educated in a special or separate class (whether in a district school or in an out-of-district program or facility) only when the nature or severity of the child’s disability prevents the child from being successful in a traditional classroom, even with special accommodations and services.

IEP: An Individual Education Program is a plan that includes: a statement of the child’s present level of performance in academics and functional skills, a list of measureable goals in these areas, a schedule of progress reports, the type and frequency of additional therapies and services, transportation, and any necessary accommodations. The IEP is developed by a team of people including a parent, the child’s teacher, a school district representative, any therapists or other professional who works directly with the child, and sometimes the child as well. The team meets at least once a year to prepare the IEP, but parents may request a team meeting to discuss a particular issue at any time. Parents must also receive regular progress reports on their child.

Other important components of the IDEA include: requirements that schools conduct appropriate evaluations of students with disabilities and that parents be included in all decisions regarding their child’s placement and education program; procedural safeguards that outline parents’ rights under the law; and a process for providing transition services to children to help prepare them for further education, employment and independent living.

If parents are not satisfied with the education program offered by the school, there is a process for resolving disagreements outlined in the procedural safeguards section. Parents can request a review by the state’s educational agency or request the services of a mediator, an unbiased person. If an agreement is not made, parents have the right to file a due process complaint and request a hearing to resolve the issue.

Further Information

The IDEA has four main parts: A, B, C and D.  Part A covers general provisions of the law. Part B outlines how children and youth ages 3 through 21 receive special education and related services.  Part C covers early intervention services for infants and toddlers, birth through age 2, with disabilities.  Part D focuses on the national program to support and improve special education for children with disabilities.

The full text of the IDEA is available online at Department of Education – IDEA website. Click on “Law and Policy” and “Statute/Regulations,” then scroll down to “View the Complete IDEA statute.”

For further information, visit U.S. Department of Education website.

Who May Open an ABLE Account?

ABLE accounts are a great new savings tool for individuals with disabilities, but not all people with disabilities are eligible to open these accounts. The rules for determining eligibility are for the most part uncomplicated, although one requirement is proving controversial.

Created by Congress via the passage of the Achieving a Better Life Experience (ABLE) Act in 2014 and modeled after popular 529 college savings accounts, ABLE accounts allow people with disabilities and their families to save up to $100,00.00 for disability related expenses without jeopardizing their eligibility for Medicaid, Supplemental Security Income (SSI), and other government benefits.

Under the ABLE Act, two categories of people are eligible to set up accounts. The first category is straightforward: If you are a recipient of SSI and Social Security Disability Insurance (SSDI), you are automatically eligible because you have already been determined to to be “disabled.”

The second category is for people ineligible for these programs, either because they have too much income or assets, in the case of SSI, or they lack a work history, in the case of SSDI. These individuals must obtain a certification, from a licensed physician, attesting that they meet the Social Security Act’s disability definition, which is as follows:

“The individual has a medically determinable physical or mental impairment, which results in marked and severe functional limitations, and which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months, or is blind . . .”

The actual legislation provides almost no further guidance concerning these disability certifications. However, in subsequent proposed regulations released in June 2015, the Internal Revenue Service (IRS) elaborated that certifications must state the person’s diagnosis, detail the limitations on the person’s daily living activities, and certify that the disability began before the person turned 26. So, to be clear, ABLE account holders can be older than age 26, but they must have first experienced their disability before their 26th birthday.

This latter requirement — which also applies for SSI and SSDI beneficiaries who wish to open ABLE accounts — is perhaps the law’s most controversial element. For many disability advocates, reforming this provision has become a top legislative priority. Versions of the ABLE Age Adjustment Act, a bill to raise the age from 26 to 46, have been introduced in both the Senate and House each of the past two legislative sessions.

After the Senate Finance Committee passed two unrelated ABLE reform bills in October 2016, a coalition of 82 disability rights groups wrote a letter to senators opposing the bills’ passage if the ABLE Age Adjustment Act wasn’t included in the package. As a result, none of the three ABLE reform bills has yet passed.

The IRS regulations also provide further guidance on situations where a person’s eligibility changes, such as when the person’s disability no longer exists, or disappears but later resurfaces. These regulations have not been finalized and thus are not legally binding, although the IRS has stated that “[u]ntil the issuance of final regulations, taxpayers and qualified ABLE programs may rely on these proposed regulations.”

SSI’s Thorny Rules for “Deeming” a Parent’s Income to a Child

Supplemental Security Income (SSI) is a federal program that helps people with disabilities and very low incomes pay for food, clothing and shelter. But even more valuable than the SSI benefit itself is that, in most states, a beneficiary who receives even $1 from the program also qualifies for Medicaid health coverage.

To qualify for SSI benefits, the beneficiary’s income and assets cannot exceed certain limits. But the Social Security Administration (SSA) doesn’t look at just the child’s income and assets, but also may consider a portion of the parent’s income and assets as if they were available to the child. This is called “deeming.”

The logic behind the deeming rule is that parents have a legal duty to support their child, and because parents’ income and assets would be legally available to support that minor child, their income and assets may be factored in the determination of the child’s needs for purposes of SSI eligibility.

Unmarried children under the age of 18 seeking SSI benefits may be deemed with the income and assets of any parent with whom the child lives, and even a stepparent if the stepparent and parent live together. If the parents are divorced and the child lives with only one parent, the child is not deemed with the income or assets of the parent living in another household. If a parent receives her own SSI benefits, or if the child does not live with either parent — for example, a child lives with a stepparent or grandparents and no parent lives in the home — there is no parental deeming. The amount of deeming to the child is reduced if the child is living in a household with other children under the age of 21. Once a child reaches the age of 18, even if she is living with a parent, deeming of parental income ceases and only the child’s own income and assets are counted in determining SSI eligibility.

The SSA defines “income” as both “earned” income, like wages, and “unearned” income, like retirement and investment income, unemployment benefits, and gifts. Importantly, Social Security benefits are counted as unearned income. For example, in 2017 a child with special needs living with one parent earning less than $3,065 a month in earned income would qualify for SSI. If all the parent’s income is unearned, the monthly income limit would be $1,510. “Income” also includes non-cash items such as the value of food and housing one receives from others. These are more commonly known as “in-kind” items of income, and are considered unearned income.

Assets, or what SSA refers to as “resources,” include things like bank accounts, cash on hand, and investments. However, not all assets are counted. For example, a parent’s home, automobile, and most retirement accounts are excluded from counting. But while a retirement account itself may not be counted, any payment from the account to the parent is countable income and thus subject to being deemed to the child.

The calculation of the deeming of income is complex. The living arrangement of the child makes all the difference and it is not one-size-fits-all. SSA provides an annually updated Deeming Chart to help families make this calculation. However, there are many exceptions that would cause the chart not to apply to a particular family’s situation, one exception being if the family has a mix of earned and unearned income, which many do. A family’s best resource is the procedure, or formula, that SSA uses in the deeming calculation, and this can be found on SSA’s website.

If you have a minor child with special needs, SSI benefits – and by extension, Medicaid coverage — may be available to your child. It may be worth crunching numbers and reviewing SSA’s charts and formulas to see if your child may qualify. And if your child is already receiving SSI benefits, it is important to understand the basic workings of these deeming rules so that you do not inadvertently jeopardize those benefits.

But, as you now realize if you have read through the above, the rules are complicated. Your special needs planner can help you sort through them and determine if your child might qualify for SSI.

Can the Beneficiary of a Special Needs Trust Change the Trustee?

The beneficiary of a special needs trust can never control or access trust funds – that is the job of the trustee. A common fear among beneficiaries or their families is that the trustee may not do what’s in the beneficiary’s best interests and that, if this happens, the beneficiary may not be able to do anything about it.

Choosing the right person to serve as trustee is one of the most important and difficult issues in creating a special needs trust. If you haven’t chosen wisely, problems can emerge. The trustee might be incompetent in administering the trust and thus jeopardize the beneficiary’s public benefits, be unresponsive to the beneficiary’s needs, or even take improper fees from the trust. Or, the beneficiary and the trustee simply might not get along. Can the beneficiary of a special needs trust do anything about the actions, or inactions, of the trustee?

The short answer is “yes.” First, the law generally charges a trustee of a special needs trust with the usual duties of any trustee, plus other specific obligations. Usually, the trustee has an affirmative duty to inquire into the needs and welfare of the beneficiary, to communicate with the beneficiary and other involved individuals, and to make certain that the beneficiary maintains eligibility for public benefit programs.

If the beneficiary has grounds to believe that the trustee is not acting according to the law, the beneficiary generally has the right to petition a court to remove the trustee and bring related actions to address the trustee’s conduct. Some states allow out-of-court ways to initiate a change of trustee. For example, in Pennsylvania, the beneficiary, or his or her representative, can draft a settlement agreement with the trustee to replace that trustee. As long as the change in trustee does not violate the essential purpose of the trust, the document is binding without going to court. However, these procedures, whether in or out of court, can be time-consuming and costly, and in some cases, merely “not getting along” with the trustee may not be enough to justify removal. Moreover, the beneficiary may not have the wherewithal to initiate the action or the legal capacity to do so. Generally, in court proceedings, the beneficiary must be able to understand what’s going on and assist in the legal representation.

To avoid these types of obstacles, a special needs planner may draft the trust document to include mechanisms for removing a trustee (including defining reasons for trustee removal). The trust can also include provisions for trustee resignation, the appointment of successor trustees, and the appointment of a “trust protector.” The trust protector is a person or entity chosen by the person setting up the trust to keep an eye on the trustee’s performance, usually with the right to remove the trustee and appoint a new one. Even though there is no need to anticipate trustee misconduct, appointing a trust protector is a recommended way to provide an extra level of protection to the beneficiary. However, the rights and procedures for changing trustees vary from state to state. Therefore, the best way to build in protections that allow for the replacement of a trustee gone bad is to consult with a qualified special needs planner.