Proposed Changes to Public Benefits Create Confusion

By Robert F. Brogan, CELA

Public benefit programs are likely to see significant modifications. Legislators are already proposing major changes to the Affordable Care Act (ACA), Medicaid, Social Security, Medicare and other programs of enormous importance to individuals with disabilities. Legislative action is likely to impact the following:

  • Repeal or revision of ACA
  • Block grants or per capita caps for Medicaid
  • Tightened eligibility guidelines for disability programs

Affordable Care Act

President Trump’s first act upon taking office was to instruct regulatory agencies to block implementation of ACA features they consider “harmful.” In addition, both houses of Congress have passed legislation that would enable repeal as part of a fast track budget reconciliation process. There’s been lots of discussion about how quickly a replacement could be in place if the law is actually repealed. Given the program’s complexity, it seems unlikely that an alternative could be shaped quickly, and interim uncertainty would be likely to shake up the healthcare market. However, it’s probable that insurers and the federal government would, for some period, continue to honor agreements in place at the time that legislation is passed.

Leaders in Congress and the administration have expressed interest in keeping these two popular provisions in an ACA replacement:

  • Coverage of children till the age of 26 on parents’ health insurance policies. This extended coverage has meant that many individuals with disabilities could postpone applying for Medicaid, which often means spending down assets and/or creating a special needs trust in order to protect them.
  • Coverage for pre-existing conditions, without which many people with disabilities would, once again, find it difficult to obtain private insurance or would be forced into high-risk pools charging premium fees.

Other features at risk include:

  • Medicaid expansion, meaning that millions of individuals would no longer have health coverage, because they make too much money to qualify for “standard” Medicaid but not enough to purchase private insurance.
  • Elimination of lifetime caps. If reinstituted, many people with disabilities would eventually need to find alternatives to private insurance.
  • Requirement that mental health be covered to the same extent as physical health.
  • Coverage for “10 essential health benefits” by exchange-sold policies. This has been of special benefit to people with disabilities because it includes habilitative services, which focus on helping individuals acquire functional abilities limited by congenital conditions.

As the legislative changes roll out, the Special Needs Alliance intends to publish additional blog posts to explain the implications the changes may have for individuals with special needs.


There have long been discussions in Congress about controlling the cost of Medicaid, and by late summer or early fall, it’s likely that focus will shift to this fundamentally important program. Recently, in fact, the House held a hearing on a few cost-saving measures. Lump sum payments to the states, in the form of block grants or per capita caps, have been proffered as one solution by the White House to be a replacement for the current funding process. Today, the federal government has an open-ended obligation to match each dollar that a state contributes to Medicaid. And when states have a high percentage of low-income residents or the federal government wants to encourage the delivery of certain services, Washington often covers significantly more than 50 percent of the expense.

Since either block grants or per capita caps would limit federal outlays, some states may see increased financial responsibility to cover services and supports.

Block grants or per capita caps in the Medicaid program may reduce the federal government’s role in setting the requirements for Medicaid eligibility. States could potentially revise eligibility qualifications for these programs, and/or change the nature or extent of benefits that current enrollees receive.

As potentially dramatic differences in Medicaid services emerge across the nation (Indiana already charges a premium for Medicaid coverage), the Special Needs Alliance intends to provide timely updates to help explain how the changes may impact those with special needs.

What This Means

For families wondering what all this means for loved ones with special needs, there are more questions than answers. But one thing is certain. Advocacy will be critical in order to provide for the highest possible quality of life for individuals with special needs. The Special Needs Alliance is joining other groups to fight for the right of people with disabilities to lives characterized by dignity and independence.


One Comment

  1. Melody Jennings August 18, 2017 at 4:15 pm

    i was denied everything by this so called affordable care act. my Ex husband for 3 yrs now has not done 1 thing as instructed in our divorce decree. he has abandoned his now 10 yr old severely developmentally delayed Autistic son. i am also Disabled with a bladder disease. my son gets a $700 a month benefit under my disability which gives us $1800.00 a month to live on his father pays no child support and they denied me food stamps for him. they gave him medicaid ins. but he has major sensory issues and by the grace of God we were able to attend the Marcus Autism Center for significant eating disorders as my son was 6 at the time and bottle dependent on organic milk only. he was near death when we got there. but after 3 months of the extensive feeding program. we graduated and he was eating pureed food. and became a happier healthier child. he is now 10 yrs old still eating pureed food as he is scared to death of any texture in his food. but to puree food it takes an awful lot to feed him. his food bill alone is a little over 1,000 a month and Georgias DFACS office don’t know this and don’t care. there was no where for me to explain how bad we need food stamps. my assigned DFACS counselor knows but will not call me back or reply to my emails or texts. so that leaves me with 848.00 a month to pay car payment insurance etc etc. and couldnt so we live on my daughters couch in her 500 sq ft apartment. without child support and food stamps and help paying for my prescriptions. there is no way i could afford a place of our own. my gosh there is just no words to express the hardship i face everyday . not to mention no respite care at all. he has been with me everyday for 3 yrs. 24/7 his own sister won’t even give me a break . but i believe that’s because we live with her and it’s taken a toll on our relationship. my son is non verbal and has major meltdowns causing harm to himself and me. even on his medication. and has caused damage to the apartment as well. i just don’t know what to do anymore or where to go that i may get some sort of help. i’ve been stripped of everything i’ve ever owned and now homeless. but his father who is a PHARM D that lives 1 hour away is living very nice flying airplanes on weekends and lives on beautiful Lake Seminole in Donaldsonville Ga. if anyone knows how i may acquire some help i would be most grateful.

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