Sunday, May 18, 2014

Catholics with (Dis)abilities and Special Needs

So many Catholics  are differently-abled. Conditions such as an autism spectrum disorder, Down's Syndrome, or a developmental delay can drastically impact how your child understands his/her faith and when he/she is ready for catechesis, sacraments, etc. This blog post is largely taken from an email to a high school friend whose son has Angelman Syndrome. She was struggling with a pastor who didn't feel her child needed the sacraments and wanted him to stop receiving the Eucharist even though he had gone through special needs catechesis and had received First Communion months before moving to that parish.

The key things I think parents of a child with a disability (particularly one that impacts his/her mental capacity) should consider:

  • Your child has a right to catechesis. Work with your pastor, diocesan employees, religious educators, and/or others until you find a method for catechizing that works for your child's needs and abilities. If you send your child to school, you should send your child to religious education in some fashion.
  • Be patient. Not all 7 year-olds are ready for First Communion and a disability might mean your child needs more time to prepare. Whether 7, 27, or 77- as soon as someone shows an understanding of the Eucharist- he/she should be able to receive.
  • Ongoing catechesis is the best way (and only way, in my opinion) to determine if your child will ever be ready to receive Eucharist (and perhaps Confirmation and/or Reconciliation too).
  • Expose your child to the faith daily through: prayer, music, rosary, Mass attendance, etc. God can cut through all barriers and the more you give God to your child the more God will give back in abundance to your family. 
  • If your child lives in a group home or care facility, work with care providers to ensure the Catholic faith is encouraged/practiced. The same goes for during hospital stays (chaplains are your best friends!). 
  • Daily Masses are often shorter and without music. If your child struggles to get through Sunday Mass, take him/her to a daily Mass. The quieter, shorter, and simpler environment might be better for him/her until they are ready to handle a Sunday Mass. 
  • PRAY! Ask God to help your child grow in faith and stay close to the Church. 
  • Trust the Holy Spirit. Your child received the gift of Understanding at baptism. The Holy Spirit will help your child demonstrate his/her understanding of the Eucharist at the right time in the right way. This requires immense patience, but chances are, if you have a child with a disability you have a doctoral degree in patience by now! 
  • The rituals and repetitiveness of the Catholic rituals (think Mass, Liturgical Calendar, rosary, novenas, etc.) can be therapeutic tools for those who strive on structure and order.
  • Look at yourself first. Do you, your spouse, and the child's siblings show reverence for the sacraments, discuss the Catholic faith with respect, and/or live out your faith at home? Your child is absorbing everything around him/her even if he/she cannot communicate that back to you. You need to be that much more conscientious if your child has a disability so he/she can absorb that desire to partake in the Sacramental Life of the Church. 
We know so much more about the human mind and disabilities than we did decades ago. We treat those with different mental capacities with much more human dignity, but there is still a long way to go in our political, social, and educational systems. I'm sure every parent of a child with a disability would agree. The same goes for our spiritual systems- our churches.

There are many excellent resources for Catholic parents who have a child with a disability- mental and/or physical- since the disability will almost inevitably lead to a difference in how that child is catechized. This is no different than an IEP or other school accommodations. It's a simple, basic fact. Loss of sight or hearing are probably the easiest to compensate for. When you get into diagnoses like autism spectrum disorders, Down's Syndrome, brain injury, stroke, developmental delay, and other disabilities, things get trickier. 

Here are some resources I've used:

The Xavier Society for the Blind offers excellent resources- many free- for those who need Braille and/or books-on-CD materials. I am not sure if their on-CD materials can be borrowed for sighted individuals who cannot read, but it would be worth inquiring about.

SPRED or Special Religious Education Development is the longest-standing form of catechesis for those with developmental and/or mental disabilities that I am aware of. It was started in Chicago about 30 years ago or so and can be found all over the world. At least in Chicago, the way SPRED works is that they do not have SPRED at each parish. Rather, the goal is to offer each level of SPRED (ages 6-10, 11-17, 18-21, 21+) at parishes in each area of the diocese. The difficulty with SPRED is you have to offer at least one level at your parish in order for your child to receive the other levels at other parishes. For instance, per the rules, since we offered the 6-10 program at the parish where I once worked, my parishioners were eligible for the older age programs at neighboring parishes. If your parish didn't offer SPRED, you needed to enroll in a parish that offered at least one level of it. So, unless/until your parish opens a SPRED center, your children wouldn't be eligible.

A friend of a friend designed a wonderful program at her parish called the Children of St. Angela Merici. I really like the Angela Merici program since it t isn't bound by the same policies as SPRED. The SPRED policies aren't bad- since they don't publish the curriculum and parishes have to pay the Archdiocese for use of the curriculum, they don't want it abused. It's just a factor that makes it trickier. Also, the woman who designed Angela Merici based it off of what she knew about Catechesis of the Good Shepherd. Myself and many CGS catechists use CGS to help our special needs students. Less reading combined with a very hands-on approach can make it a great tool for special needs parishioners.

Loyola Press does an amazing job with sacramental prep and I am VERY eager to see their upcoming adaptive curriculum for children with disabilities. These curricula are all-inclusive and have everything you need. Parents and/or parishioners could order them and use them in the home or outside of formalized parish programs. They are particularly designed for use with the non-verbal child and my catechists and I have found great success with them! 

A great, national resource for parents is the the National Catholic Partnership on Disability. Their site is full of terrific information. Locally, you should contact your diocese to learn who their rep or department is for special needs Catholics. Most dioceses I am familiar with have some staff dedicated to this important need. 
Most importantly, you need to know what ways your child best takes in information as well as which ways (if any) the child shows comprehension of that information.That will dictate the most ideal method(s) of catechetical instruction. I have often developed an individualized program for special needs students.

So, what does all this have to do with sacramental prep, particularly Eucharist? How the child  relays comprehension is where things get complicated. Priests, deacons, and/or Extraordinary Ministers of Holy Communion are advised to use their discretion and shouldn't deny someone communion unless they believe there is serious reason to do so. If/when anyone denies a special needs individual communion, please know they are doing so to protect themselves. Just as they wouldn't wish to give communion to someone in a known state of mortal sin, they don't wish to give someone communion if they don't believe the person knows what/who they are receiving. Don't hold it against anyone, though I recognize how extremely painful, isolating, and discouraging this can be. Try to gently approach them after Mass and advocate by explaining how/why that person is prepared. Let them know there are no hard feelings!

The NCPD has an excellent article on sacraments and individuals with disabilities. In my opinion, this paragraph is of utmost importance:

Parents, those who take the place of parents, and pastors are to see to it that children who have reached the use of reason are correctly prepared and are nourished by the Eucharist as early as possible. Pastors are to be vigilant lest any children come to the Holy Banquet who have not reached the use of reason or whom they judge are not sufficiently disposed (Canon 914). It is important to note, however, that the criterion for reception of holy communion is the same for persons with developmental and mental disabilities as for all persons, namely, that the person be able to distinguish the Body of Christ from ordinary food, even if this recognition is evidenced through manner, gesture, or reverential silence rather than verbally. Pastors are encouraged to consult with parents, those who take the place of parents, diocesan personnel involved with disability issues, psychologists, religious educators, and other experts in making their judgment. If it is determined that a parishioner who is disabled is not ready to receive the sacrament, great care is to be taken in explaining the reasons for this decision. Cases of doubt should be resolved in favor of the right of the baptized person to receive the sacrament. The existence of a disability is not considered in and of itself as disqualifying a person from receiving the Eucharist. 

In my special needs work, understanding of the Eucharist has been demonstrated by those with severe disabilities and/or communication struggles by:

  • using nonverbal indicators to show comprehension of catechesis
  • seeing cues of greater reverence when in the presence of the Blessed Sacrament
  • showing improved health and/or calmness after reception of Holy Communion
  • using communication devices to better articulate understanding

Special needs parishioners don't just need catechesis and sacraments. They need to be active, engaged parishioners.
This is a lovely story about a relative of mine. I think it shows how much someone who is differently-abled can contribute to a parish community. 

Most importantly, pastors, youth ministers, DREs, and others need to do their best to be open to creative solutions:

  • Allowing for a companion to help someone maneuver around the altar and/or complete their ministerial duties.
  • Allowing someone to lector or cantor from someplace other than the ambo if it is not handicap accessible. 
  • Allowing a child or person with a cognitive disability to receive Communion and Confirmation (once properly catechized) even if he/she cannot receive Reconciliation (often due to inability to communicate or inability to understand right from wrong).
  • Providing a stool or adjustable chair for someone who cannot stand at the ambo to proclaim the Word.
  • Bringing a ciborium or chalice down to a parishioner who cannot, physically, climb the altar but wishes to be an Extraordinary Minister of Holy Communion.
  • Improving sound systems and/or having special devices for those with hearing disabilities.
  • Translating documents, forms, etc. into Braille when needed. (There may be volunteers in your community who can do this.)
  • Offering sign language interpretation when needed. (There may be volunteers in your community who can do this.)
  • Providing large print and/or Braille materials. (Side note: I once had trouble finding a large print copy of a novena to St. Lucy. The novena I liked wasn't published in large print. This meant I had to use a copier to blow up a copy of a novena for two parishioners loosing their eye sight. #epicCatholicfail
  • Providing transportation for those who cannot drive to Mass, parish events, etc.
  • Installing a ramp when building a new church or redoing an altar.
  • Making sure all parish meetings/events take place in the handicapped accessible parts of your campus.
  • Permitting parents to accompany someone to a youth group or asking a teen to befriend an individual (say on the autism spectrum) so he/she can enjoy the benefits of youth programming.
  • Ensuring staff are trained to administer treatments such as Epi pens, insulin shots, etc. if someone in a their ministry may require this. 
  • Learning about gluten-free hosts and developing a plan for their use to accommodate parishioners with dietary needs. 
  • Having members of K of C, CRHP, or other parish groups "sponsor" a special needs individual who wishes to join the group but may need someone to occasionally simplify themes being discussed, etc.
  • Using catechetical and prayer materials designed for children if this better matches the cognitive understanding of an adult who has a disability.
  • Working with neighboring parishes to build ministries for those with disabilities (both physical and intellectual), particularly if your parish is small.
  • Having special needs religious formation, in some capacity, for parishioners who need it.
  • Providing spiritual formation for adults who do not have the intellectual abilities of their peers but  need a safe, fun place to go to grow in their knowledge of Catholicism, discuss their faith, etc.
  • Offering a small or private First Communion Mass to someone who may struggle at a regular, busy, loud parish Mass.
  • Making sure service dogs are permitted in the choir loft, on the altar, etc. as needed so the person needing the dog can minister.
  • Asking your special needs parishioners and/or their caretakers how you can better involve them in the life of the parish.
I hope this helps and sparks interesting dialogue in your parish about including special needs parishioners in the life of the Church. Please email at if I can help you advocate for a special needs parishioners, develop a curriculum, and/or provide guidance on how to help a parishioner with a particular special need. 

What tools have you used to help Catholics with special needs? What other tips do priest and parish staff need? 

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